Where in the world is Max and Co.?

If it's June it must be Baltimore! This is our annual fun-filled, all inclusive stay at the world renowned resort known as Johns Hopkins Children's Center. Although we are in the midst of our dawn to dusk ritual of doctors' visits, blood work, x-rays, ultrasounds, and Max's personal favorite CT scans (yes, I'm making that part up) we did find a few hours to visit Washington, D.C. last night. In the last few years we have tried, as much as possible, to throw in a few fun moments into these trips so that the kids won't be completely miserable.

I'm glad we did this yesterday because today ended up being quite scary and emotional, so much so that I am too drained to even write about it tonight. Suffice it to say it was another one of our famous "fire drills" and we thank God it all ended well. More info tomorrow.....

First Stop - The Vietnam Memorial

Second Stop - The Lincoln Memorial

The boys taking a break 

A family with a view 

Mom and Max

I love this city!

Max at the Martin Luther King Memorial Under a Favorite Quote

"Trailblazer of the Week"

Today has been just another day in Max's "big week". Beyond yesterday’s award ceremony this was also Max’s week as “Trailblazer of the Week” for his classroom. What this equates to is a Popsicle and certificate from the school and snacks and a “show” provided by Mom and Dad.

By the way, I should mention that next week will be just as “big” as this last one has been. Next Thursday is Max’s 12th birthday and all I can say is, “where the heck did the last dozen years go?” I guess Max is right it really is all about him! This is his “Birth Month”, you see Max has never celebrated just one day, he believes it should be a month long activity-fest!

Make a video - it's fun, easy and free!
www.onetruemedia.com

He Did It! He Won!

Today 126 of Gilbert, Arizona's best and brightest were honored during a "Character Counts" award ceremony for the District's elementary school students. As some of you might remember from an earlier post Max's wonderful teacher, Mrs. Funkhouser, nominated him for this award and this morning Max was honored as an "Outstanding Nominee"!

To say tears were flowing would be an understatement. This morning I realized just how many people love and respect Max for who and what he is. They don't see him solely for the challenges he faces medically or the courage he shows as he does so, instead they see him as the kind, loving, gentle soul he is.

 

Max is so proud of his metal, especially because they spelled his name correctly!

Max accepting his award from the Mayor and City Councilwoman.

That trademark smile we love so much

Max, Mrs. Knoph, and Mrs. Funkhouser

These two ladies will never know what their love for Max means to us. Because of them we can send Max to school each and every day and know that he is loved, respected, and extremely well taken care of. Mrs. Funkhouser and Mrs. Knoph we love you both to bits!

Max's Weekend in Pictures

We all know Max and we all know how much he LOVES sports so this season has been particularly exciting for him as he got to try his hand at a new sport, lacrosse! As always we need to thank Coach Tav and his organization Kids Playing for Kids as well as all the wonderful kids playing for the Arrowhead Warriors for everything they do for Max. The kindness shown Max (and by default us) continues to be overwhelming from this incredible group of folks! 

Again, knowing Max it's all about dressing the part so he was thrilled to be outfitted with gear from some very generous folks at Elite Lacrosse in Scottsdale. However, some very cool kids and their coaches from Scottsdale Lacrosse Club's Mustangs team took it one step further after Saturday's game when they presented Max with his very own Mustang's jersey. Max was thrilled to add to his sports' jersey collection! Perhaps one of the highlights in all of this is reflected in what I like to refer to as a "Maxism", i.e. some pearl of wisdom that makes sense only in Max's world. It seems that after the kids presented Max with his new jersey he went up to the coach's son and said, "thank you so much for the new jersey but you know I can't change teams". So there you have it...my son is nothing if not polite, egotistical but polite!

A very BIG thank you to everyone who has gone above and beyond in honoring Max and his desire to be part of a team. I can only hope that the shear joy on his face and the tears in my eyes has clearly demonstrated to them the power of kindness.

 Max with his team the "Warriors" and his new friends the "Mustangs"

 Max being presented with his very own "Mustangs" jersey

Monday Morning, off to school in his lacrosse "finest"

Max's World

As much as we hate to admit it, as much as it makes us super emotional to watch this video we know just how blessed we are to have the ability to bring Max to Johns Hopkins to receive the type of care this video talks about. We love you Dr. Vricella and Max's whole "gang" at Hopkins!

Empathy: The Human Connection to Patient Care

A good friend that we have known since Max's birth sent this video to me this morning. Chris is one of those extraordinary people that come into our lives for a reason. God gave us this special life with Max, I doubt I would have ever chosen this road. Chris is different, she has chosen this road by adopting several children with health issues, a few of which are cardiac. She has shared a lot of her wisdom with me over the years and I have more respect for her than I've probably ever told her. Chris, thanks for this very emotional video and an even bigger thanks for all you do for cardiac kids and their families!

Get the Kleenex! 



Wow!

Most of you who know me know that I am rarely if ever speechless, today is an exception. And a HUGE one at that!

Earlier this afternoon I received an e-mail from Max's teacher, when I opened it I was expecting an update on the weekend's homework assignments but instead I found the following essay. It seems Mrs. Funkhouser has nominated Max for a "Character Counts" award. At the end of the day I have to say I really think Max has already received his award -- he has the best teacher ever! This teacher will never fully know how much she and her love for Max has touched my heart. Not every "special" kid is blessed enough to have such incredible love and support from his whole community.

On a lighter note Mrs. Funkhouser will be following Max to Junior High next year......that is if I have anything to do with it :)! A big thank you to this wonderful lady!


Massimilliano Marangella


Upon entering my classroom, every person who joins us is greeted enthusiastically by my student Max. He brings so much positive energy to our classroom each and every day and is a beloved member of the student body here at our school. Max is a student whose peers respect and admire him and he holds a special place in our staff’s heart. He is a person who simply encourages you to smile and see the beauty of the world as he does. He absolutely deserves the Character Counts Award because he resonates all the traits that the character counts program stands for.

To understand Max a little better you must first understand that Max is a medical miracle. His “second home” is John Hopkins in Baltimore, MD where he receives treatment for a rare tissue disorder. He has had over 40 surgeries and procedures in his 11 years of life. He understands challenges and hurdles better than any 11 year old should and continues to prove his strength and determination not to have to miss out on anything in life. For example, just before Christmas, Max underwent his 41st procedure and while still coming out of sedation confirmed with his doctor that he would be able to be back to school before break so he wouldn’t miss out on our class’s holiday party. He simply loves life and tackles each and every day with extreme gusto and drive. He hates the moments he has had to sit on the sidelines, and every opportunity he has to participate he does so without restraints.

Having been a patient so many times in his life, he understands the challenges of being a patient in the cardiac ward, and gives back selflessly with his family alongside him at Phoenix Children’s Hospital. He delivers presents to the children, and goes in to volunteer to keep company with them and do his part to cheer them up. He has the most positive energy, and the greatest sense of humor of any child I have ever met. You simply cannot help but smile when you are around Max because he brings it out of you. He does his part to help others around him and inspire others by openly sharing his energy with them.

He is respectful to others in class as well as in his sports teams he plays on. He is the biggest cheerleader of others successes and relishes in recognizing greatness in those he is around. He celebrates accomplishments with sincere joy and enthusiasm and builds others up with recognizing their good qualities.

Max’s days are packed from school, to sports, to therapies and doctors appointments and never does he ever let that negatively effect him in school. He is always responsible for the material he is assigned and will do his best on every project and activity before him. He works tremendously diligently and is successful because of his hard work and determination. Due to his physical limitations, homework often takes him significantly longer than for his peers, however he never complains and always shares the highlights of what he has learned in completing the activity. He is trustworthy too, for instance, when he needs a weekend to complete an assignment, you can be certain that come Monday, it will be turned in promptly without even having to ask.

Max exemplifies this award in every way possible and is truly a Character Counts kid. His heart according to medical doctors might be in need of repair, but his heart that reflects his soul is more complete and complex than any child you would ever meet. He is admired for who he is, what he has overcome and powered through and the way he treats and interacts with those who are lucky enough to know him. One can only hope to be lucky enough to know a kid like Max in their lifetime!