Reflections

Today’s post is another one of those “had to post” thoughts I have from time to time. Very often as Max’s birthday approaches I start to reflect on so many things: how far we’ve come, how far we still have to go, the darkness of the past and the uncertainty of the future. But mostly I try to see the miracle we have been given. Don’t get me wrong it can all seem like a constant struggle because in a sense it is. We are trying to win a war one battle at a time!

Because of this never-ending effort I must admit it bothers me when people tell me “to take it one day at a time.” While that may seem the logical approach to any problem this tactic is a luxury we just don’t have. We can’t take it as it comes – if we don’t consider tomorrow we are not truly helping Max. It is our job as Max’s parents to look towards the future and prepare for it.

We have to know what the medical field is doing for kids like Max so we can make decisions based on fact not emotions. The more we know the more positive a medical outcome Max will have. Children like Max didn’t use to survive, they didn’t grow up. Even the medical world doesn’t really know how to keep up, most congenital heart defect adults are still seen by pediatric specialists because adult cardiologists have never dealt with an adult with a congenital defect – they’re used to adults whose lifestyle of poor eating, too little exercise, smoking and drinking have caused them to end up in a cardiologist’s office whereas our kids are just innocent victims of heart disease.

We also have to prepare for Max’s practical future, how will society treat Max? Will his peers at school make fun of him? Will he be left out of games and recess fun because he can’t keep up? Kids can be cruel, heck I know some adults who have been just as heartless when dealing with Max. As a society we really don’t embrace differences and that’s a huge problem on many levels (alas that’s a topic for another entry). As for now Max’s super ego shields him from all this. Perhaps he has cultivated a strong self-image as a response to how others perceive him, as if his strong faith in self protects him from other people’s insensitivity. But still we have to plan; we have to be sure Max has the tools he needs to succeed just like anyone else his age does. We’re turning the atypical into the typical, believe me this is no small feat!

So as another year in Max’s journey comes to a close and the promise of a new year looms on the horizon I realize that not much has changed, we are still the custodians of “Max’s miracle” and as such we know that Max will continue to amaze us in his ability to defy all the odds thrown at him. Sometimes I think I worry just because as an Italian mother that’s what I am programmed to do…..

The Happiest Place on Earth

The kids were both on Spring Break this week and because Michele had paperwork to file at the Italian consulate in LA we decided to take a little road trip.....as if any road trip is "little" for the Marangella's and their traveling medical clinic (I really should have attached the photos of all the supplies we have to pack for Max "just in case" every time we leave home but I didn't want to scare anyone!) Our trip was split between the bureaucratic (gotta love the Italians and their myriad of rules, legal stamps, appropriate picture size for any and all documents, etc., etc.) and the typical tourist route . After a full day of appointments downtown completing all of the remaining documents Michele brought home from Italy we felt the kids had earned a treat -- so off we went to Mickey's House (as Max calls it). All in all the kids had a great time, Max and I rode "Small World" dozens of times while the more adventurous members of the family hit every roller coaster the Park had to offer.

Of course in our typical fashion we ended our stay with a few things we didn't have at the start. Max acquired a horrible upper respiratory infection -- his cough was a great way to get through those long Disneyland rides as most mothers grabbed their children and ran in the opposite direction. I was the lucky winner of a fantastic case of pink eye which leads me to believe that Disneyland is not the "Happiest place on earth" but rather the germiest -- just goes to show that lathering your children in Purel a thousand times a day doesn't always work!

Max is back to school tomorrow and I'm back to work, I'm actually looking forward to the rest and relaxation of the office!

Wishing you all a great week!

Zoo Saturday

No I am not referring to a typical Saturday at our house. This past Saturday Christie (or Saint Christie as I refer to her) who is both Max's occupational therapist and respite provider took the kids to the Phoenix Zoo. It was a win-win situation all the way around, the kids were thrilled to go to the zoo and Michele and I were thrilled with the peace and quiet and the ability to simply run errands without the kids. As we rode around town I had to fight the urge to turn around and yell at the backseat -- there were no squabbling children to yell at! What a concept.....no noise from the backseat!

Christie brought these by last night so I thought I'd share a few photos of my animals interacting with their counterparts!

Max checking to see if the stingrays are hungry. He didn't need that hand anyway!

Ellie refers to these as her "homies". Is she trying to tell us something?

Max's first car.

Preparing for the cardiac triathlon?

Wishing you all a great Friday!

Today’s the day! Well maybe…..

Michele was due home this evening at around 8pm Phoenix time. You may notice the “was” in that sentence. At around 4am this morning my cell phone rang (do these people NOT know what a phone call at that hour does to a person?) obviously computer generated, telling me that I (Michele) had been re-ticketed. Now I must admit I was a bit groggy so while listening to the message I thought very little of it because the whole of Michele’s trip had been “re-ticketed” when we changed his travel date. I assumed that’s what the call was all about and peacefully went back to bed…that is until I realized that the recording said Michele had been re-ticketed for March 12th not 11th! As if the ringing phone in the middle of the night was not enough to send my heart racing now I was really in a panic. The 12th? No it can’t be. Do these people not know what they’re doing to me? I need a troop change here, my tour of duty is up – they just can’t do this to me! So I hop out of bed and call United only to get a less than sympathetic representative who did not understand the consequences of an irate, sleep-deprived, stressed-out wife (that’s a man for you)! I was assured that the issues in Rome were of a mechanical nature so Michele would receive a hotel and meal voucher and depart tomorrow evening arriving in Phoenix on the same flight he would be missing today…OK, this guy is REALLY not getting it. Does he not understand that he’s just told me that the husband who has abandoned me for a month will receive the added bonus of a peaceful night’s sleep in a nice hotel all while being wined and dined on someone else’s dime? Where or where is the justice in this whole thing? That hotel room and dinner are MINE all MINE not his! I deserve it more! I calmly (OK, I’m fibbing here) told the gentleman that surely there was some other flight they could book Michele on this evening. Nope, there was only one other later flight and it was booked. I told him I didn’t really care if it was booked they could seat Michele on the wing for all I cared just put him on the flight. Nope, no can do…he’ll be on tomorrow night’s flight, thank you and goodbye. That man’s only saving grace was that his call center is thousands of miles away from me so I could not possibly cause him any physical harm.

Upon my arrival to work this morning I checked each and every airline I could think of to find a flight to Phoenix this evening so that I could call United back and have them switch Michele to another carrier. Guess what? I was able to find one, although my friend from my first phone call was unable to find anything. So I call United back to give them this happy news and what do I find out? That United does indeed have a later flight this evening into Phoenix and Michele has already been placed on the list for a seat. Why on earth do I have to do everyone’s job for them? I just refuse to believe that I’m the only competent human being on the face of the Earth. Maybe the most desperate but certainly not the most competent….

So there you have it, Michel might be home this evening or he might be on a mini-vacation at the airport Hilton. You tell me which is less likely to be harmful to his health.

As I said to anyone who asked me this week if Michele would be home on Wednesday: “I’ll believe it when I see it”…..and the saga continues…..

End of the Week Wrap-up

I must admit it’s been a rather boring week in Max’s world. “Boring” is without a doubt my favorite adjective when used in the same sentence as “Max”. I’m just praying I didn’t jinx myself….

My duties as Mr. Mom this week included going on Max’s school field trip with him - a hike! Now I must admit I am first and foremost a New Yorker, I’ve never been hiking (let’s face it there are very few mountain trails in downtown Manhattan) so I wasn’t super-excited about the prospect of leading a group of seven year olds up a hill, or so I thought. This was NOT a hill, this was part of the Rocky Mountain chain (New Yorkers live to exaggerate). I almost had a heart attack just looking at the trail let alone hike it. Thankfully as luck would have it Max’s teacher thought it best that I stick with Max and she would take my group in case Max pooped out. Guess who pooped out? You got it! I was so far behind Max at points I couldn’t even see him! I did however slow him down about three quarters of the way up mostly because I realized I would be no help to him if I passed out. It’s rather depressing to know that your seven year old son with a heart condition, respiratory challenges, and circulation issues can beat you up a hill, I guess it’s time to dust off the treadmill and get cracking. Michele DEFINITELY gets the pleasure of going on the next field trip, with my luck it will be something sedentary like a movie….how is it that I get stuck every time?

Our weekend is packed with end-of-the-season soccer games, Max is gearing up to lead his team to victory. He insisted to Ellie this evening that she had to wear her cheerleader costume from Halloween a few years back because every soccer star deserves a cheer section. There is no end to this kid’s ego!

Have a wonderful weekend!

It’s Official

My stint as a single mother continues. Michele is still up to his ears in Italian bureaucracy and here we are on day 18 and my sanity is on shaky ground (what else is new?). While I know he is working very hard to finish and get home I also can’t help but think that while he is busting his backside all day to finish one piece of paperwork or another he’s also eating better (way, way better), drinking excellent wine, having his laundry done for him, and most importantly he is sleeping! Sleeping! Did you hear me? He’s actually sleeping! I could probably live with anything else on the list but I must admit I am most jealous of the fact that he’s sleeping…the wine is a pretty close second for those of you who might be counting.

On the home front there is very little to report, no floods, earthquakes or other natural disasters to speak of. Unless of course you count the broken TV remote that caused some very serious tremors this week. My children have been forced to manually change channels, the horror of it all! When I suggested that we always had to get up, cross the room and change the channels when we were kids what response did I get? “Yeah, but that was like in the 50’s or something when you only has three channels to search through.” Oh right, I forgot how difficult it must be to surf through 200+ channels after the exhausting walk from the sofa!

This week also ushered in the start of Lent and after careful consideration Max has decided to give up Sponge Bob for the next 40 days. I should clarify this by letting you know my son is not this pious, he was content to give up candy until I pointed out that he doesn’t even eat candy so there was very little sacrifice involved. Thus it was decided that no Sponge Bob was the way to go (this was a win-win situation, Max is learning sacrifice and I’m not listening to an animated sponge 24 hours a day, hallelujah!), of course this lasted for about as long as it took us to drive home from church. When reminded that he had to bypass the dreaded channel (yes, manually) he immediately asked if God allowed for changes in sacrifices. I suggested that as far as I knew God does not have an exchange policy for Lenten sacrifices – you break it, you bought it! You gotta give him points for trying….

Enjoy the remainder of your weekend!