Max's Adventure....Eight Years Later....

Tomorrow is the big day, it's Max's 8th Birthday! So often I think back to that first year when we thought Max would never get discharged from the hospital and then I see Max's shining face as his second grade class sings to him while he wears his king's crown and robe....oh what a smile that kid has! I know there are many who thought Max (and his family) would never make it this far but these are the same people who underestimated Max and his refusal to give up, ever!

I spent time this week going through old photos, while I had a good a cry I also had a few chuckles, I never thought I would look back at that year and be able to smile let alone laugh. At times there is a lot of sorrow for what Max has had to endure but there's also a strong sense of blessing that we all survived and Max has flourished. I took some of these photos and put together this video as a present for Max so he could see just how far he has come. For our non-Italian friends I need to explain the song I chose. I did not only choose this song because it is Max's favorite song ever, I chose it because the words have great meaning to me, in fact I cry whenever I hear it. The song describes love as an adventure and that the person for whom the singer is singing will "be mine until my eyes no longer shine" (rough translation but hopefully you get it). I think it sums up our life with Max perfectly – our love for our son has certainly been an adventure (understatement) and we will indeed always be his for eternity.

OK enough of these melodramatics…. I also chose this song because it is the first song Max learned from start to finish and he sang it to all his nurses loud and off key in typical Max fashion.

Max with much love, hugs and kisses we wish you a very happy and HEALTHY birthday—
Mommy, Daddy and Ellie

Photo and video editing at www.OneTrueMedia.com

Living in a Bubble

I had planned on writing about all of the insurance woes I have been having this week getting meds, tests, and doctor’s visits approved by our health plan (gotta love United) for Max but something happened that made my problems absolutely insignificant.

We learned this morning that a precious little girl who was also part of HopeKids has passed away from complications of her bone marrow transplant. Although we have sat perilously on the brink of just such a disaster with Max on more occasions then I’d like to remember that first year of his life I simply cannot image the heart-wrenching pain this family is experiencing today. Unless you have lost a child prematurely there is no way of fathoming it, none of us can. There are no words we can say that will ease their pain and out of respect for this family and the spirit in which this little girl lived we should not even attempt to search for these words. It would be, simply put, an injustice to do so.

As I thought about all of this I realized something, I realized that sometimes as the parents of chronic kiddos we live in a bubble as we struggle with our daily issues. We selfishly tend to perceive our problems as the most difficult, the most earth shattering, and then something or someone comes along and makes us realize that there is a bigger picture. Others are suffering a far more difficult fate, they are saying goodbye to innocent lives that are passing far too early. Rest in peace little Rowan, rest in peace.

Max and His Soccer Buddies

Field Trip II – The Sequel

As many of you might remember from an earlier post I am not an enthusiastic fan of second grade fields trips but alas today I was dragged kicking and screaming on yet another adventure in Extracurricular Land. This was supposed to be Michele’s turn on the big yellow school bus with children who believe it is their mission in life to dart away from their chaperone at every possible chance. But no, my husband found some other task that would prevent him from all this fun – something about digging trenches in the backyard for trees he’s moving about.....how convenient of him to finally get to the project I’ve been telling him to start for nearly two years. Now I’m not one who believes much in conspiracy theories but I was a bit suspicious on this one…..

So were did I go with the little people? We spent the morning at the Gilbert Historical Museum. Now I didn’t even know that Gilbert, Arizona had a history but evidently it does, in fact when I made this comment to Max’s classroom assistant she smiled sweetly and replied, “I’ve lived in Gilbert my whole life and so has the rest of my family.” Gulp, the New York snob officially sticks foot in mouth!

All in all this trip was much easier than the hike up the mountain (no kidding!) and the only sticky moment came when we visited the replica of the first pharmacy in Gilbert – Max pointed to one of the potions and exclaimed in his typical “inside voice”, “That looks like one of the creams Daddy puts on his fanny when it itches.” Ouch! I haven’t related that one to Michele yet and I think I might just keep it a secret between me and 24 second graders.

Thank God the end of the school year is on the horizon!

Happy Easter!

Not much new to report from the home front, which is always a good thing! So I thought I'd send out a blast from Easters past.....

...Max's first Easter and trip to the mall. It only took him a year but he was finally able to venture out into public. How long ago it seems!

Wishing all our friends and family a very Happy Easter!

The Weekend in Pictures

It was a full weekend for the Marangella family. On Friday evening Max had flag football which he loves, it's just one more sport for him to excel at or so he tells us! On Saturday we took the kids up to Bumble Bee, AZ (population: 20) and spent the day at Bumble Bee Ranch as guests of HopeKids. If you're into horses, cactus and long dirt roads this is the place for you! It was a bit rough for this New Yorker but the kids had a great time riding horses, taking a spin in a Hummer, and getting a little target practice in (yikes!). I was able to sit quietly in the sun with no other sound then the thoughts in my head, what a great day!

On Sunday we celebrated Michele’s birthday (I have been threatened so I cannot share numbers…), Happy Birthday Daddy!

Max meets Bucky! His first ever horseback ride.

The family horse expert. Hundreds of dollars in lessons and yet they still lead her around by the reins.

Armed and dangerous.

Out for a ride in the country.

Max, special guest of Costco and the Michelin Man at an "after hours" party.

Happy Birthday Daddy!

The sins of our fathers......

Religion is something I generally don’t like to discuss as everyone has their own belief set, which is as it should be, but I just can’t resist sharing some of Max’s views on this topic. This week as Max prepared to make one of his sacraments he managed, in typical Max fashion, to provide us with his own special take on matters all the while lending a bit of levity to what most consider serious business. As Max prepared to make the sacrament of Reconciliation (in the Catholic Church this is when we go to the priest to confess our sins, we often refer to it as Confession) we decided we needed to help Max practice for the big event.

In order to coach Max we found ourselves constantly quizzing him on the basics: how do you make the sign of the cross, how do you say a rosary, etc., etc. So one day on the way home from catechism I decided to broach the weighty topic of what constitutes a sin so I asked Max, “What is a sin?” Without missing a beat my son responded, “Something you do.” He went on to explain that I, his father, his sister, and even his dog commit sins and lots of ‘em. Now I don’t deny that I have my fair share of discretions but I was shocked that Max truly believed he was without sin, after all I live with this kid and have seen first hand some of his shenanigans. But there you have it -- Max felt he would simply have to make up a few sins to tell the priest. He asked me if I thought he should go with stealing and killing – I suggested that unless he wanted the Sheriff’s deputies to come knocking on his door he might be wise to go with the classics: disobeying your parents, fighting with your sister, etc. But Max felt these sins were too boring and would not work for him. So he decided he would help us out by confessing our sins and be done with it…..

Fast forward to Monday evening, the big day! We take Max to church were he filed in with all the other 2nd graders while we watched from our pew. When the time finally came for him to go up to the priest Michele and I laughed as we watched Max carefully select which priest he would go to, almost as if he was deciding who would go easiest on him. After much consideration Max joined a line and waited his turn (as best as Max can wait his turn). Because I was a bit nervous about how Max was going to do I found myself examining how the other children were doing, I went so far as to time how long each child spoke to the priest – on average it was under a minute. Great, it seemed that this would be fast and easy as the priests were trying to rush everyone along.

Not so much for Max….when it was his turn he calmly made his way up to where the priest was sitting as if he was important enough to make Father wait. After a few seconds I noticed the priest broke out into a laughing fit, now he hadn’t done this with any of the other children so I was a bit concerned. Father continued to laugh with Max until I actually thought he would pee his pants. This went on for nearly five minutes! I considered going up to the front of the church and pulling Max by the hand back to his seat. Finally with a hearty pat on the back the priest blessed Max and sent him on his way to do his penance. I must admit it took a while for the smile to disappear from the priest’s face. Once he had completed his prayers and we were on our way home I asked Max what he had discussed with Father. He told us that he had indeed confessed our sins for us because as we know he didn’t have any of his own. Great….the priest was laughing at us and our sins NOT Max and his. Something tells me it’s going to be difficult for me to show my face at Mass this Sunday……