Over the past few months I have thought a lot about giving. I mean, as in the 'act of giving'. Much more so than I have thought about it in the past and of course I know why. It's because I have seen so much of it graciously poured out on our little buddy Jesse. I know when we think of 'giving', usually our first thought relates to the giving of finances but we've learned by experience there is so much more that can be given than money. I've said it before, but it can't be repeated enough, we have been royally blessed by gifts of kindness in every form and you should know that all of it has benefitted Jesse. Many times gifts of encouragement and good wishes have been the fuel we have needed to keep pursuing this goal of building back a healthy, happy and normal little boy. Our prayers have been supported and strengthened by yours and one day at a time our dreams are being continually realized, through the love and efforts of others.
And at the centre of all this giving sits a little boy that is unaware of any of it going on. Oh he's aware that he is loved, protected and cared for but like the calm in the centre of the storm he is unaware of the whirlwind of activity and energy orbiting around his world from every direction. Once again I have to quote Leo Buscaglia who has said that, "Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around". His words go to the heart of what I am saying. But my thought of late is this, Jesse is the recipient of all this giving but is there anything that we can say that our little man is 'giving back' for all he has received? Without question we know that no one that has given anything has expected even the slightest return for their generosity, at least other than Jesse's gradual improvement, and this by the way is such a testimony of the quality of people that have somehow come to surround us. Based on the comments we have gotten this past year I believe we can say that Jesse has in fact given something of value back for all the battles he has fought and the surviving he has won.
Initially when our story broke in the news, outside of our primary concern for Jesse's life our family was so reluctant to expose the painful event our family was going through to the media and the community at large. We also worried that we would be judged as negligent care givers or irresponsible in some way, which I know would have felt like rubbing salt into an open wound. And a wound it was. The protective instincts for our family loomed large in both my wife and I in those first fragile weeks. But as time crawled along hour after hour and day after day, one beautiful, caring person at a time who was deeply touched by our story began walking into our lives. Eventually we felt safe enough to begin sharing memories of those horrible black moments of near death in our back yard and the ensuing days that followed for Jesse and our family. Now more than a year later we have received so many wonderful notes thanking us for sharing our story and for the inspiration you have felt by knowing it rather intimately and following it. This you must know is a HUGE compliment to our family! We are so thankful for the sensitivity that has been shown us. Our fears of thoughtless judgment were never realized.
Admittedly though we have received so much of what is good in you all, who would ever want to go through the experience of coming this close to losing a child and to have to do all that it takes to get back what was lost of him? Yet for some reason that is not yet completely clear to us, this it seems is our course and the one that we are compelled to follow with all the passion, wisdom and faith that we can muster. As a family we exert our best effort for Jesse. But it is Jesse that works the hardest.
Currently Jesse he is on withdrawal from a very strong drug. For a year now we have been emphatic about weaning him off of all the medications he was put on during his first few weeks in the hospital. This is a major detoxification process. We can only wean one med at a time because if we wean two meds simultaneously and he has a bad reaction we won't know which drug he is reacting too. The current one has been almost five months now and Jesse is on his last week of what has been a painfully slow process. It will be two more weeks until his body adjusts to the absence of the drug and we know they will be difficult for him. In the past three days Jesse has had two scary refluxing experiences. This is something he goes through generally only about once a week or less. After his feed (by G-tube) sometime later he just starts throwing it all up. It comes up violently filling and blocking the airways of his mouth and sinuses. These are scary times when Jesse seems the most fragile but they're also the times that I think we are most proud of him. His bravery is amazing. I believe most well children would cry, firstly because it feels terrible and secondly because of the fear that they can't catch their breath.
Jesse never cries. He processes. We can see it in his eyes. Remember this is a boy that hasn't had food or liquids going down his throat in over a year. He has mostly forgotten the swallowing process, but he just kind of raises his eyebrows, focuses intensely and over several minutes he somehow clears all his airways. By the time the episode is over all the skin around his eyes is red, his nose is red, and his lips are swelled and pink, and oh yes, he isn't crying. You may not believe this but when he has won his breath back, he knows he has won another battle and he is immediately happy about it.
Jesse smiles...and we cheer him. He's our little Ultimate Fighter. The reflux episodes leave Jesse with a real gurggly sound in his chest and a wheezing in his sinuses for a half hour or so. That's when his loving mother calls him Darth Vader. That's seems so cruel, so I just call him Darth Jesse :)
As I am writing this Jesse and his mom are breathing 100% pure oxygen in a hyperbaric oxygen chamber. The oxygen is flooding his plasma and cerebral spinal fluids with the most important ingredient needed for his brain to build new cells. After his session he will immediately travel to his next appointment, a very specialized physio therapy treatment called the Anat Baniel method. Jesse has been improving steadily since starting it about a month ago. Our treatment plan is to continue with our various therapists until we find that progress has slowed noticeably with any of them or until we discover a more effective therapy or practitioner, always upping our game and moving forward seeking the greatest advantage for our boy.
I guess that's all I have to report for now but I will take this opportunity to thank you all for following these blog updates. I look forward to your thoughts and comments as they give our hope such affirmation and our hearts such encouragement. I would love to hear from you. We are all travelling a road together and creating memories as we go. The videos on Jesse's YouTube channel have been viewed now more than 4,000 times and he has a growing list of Twitter followers @jessearrigo.
I found this little quote that I think is so true..."Your greatest memories aren't always about where you are or what you are doing. Sometimes it's more about who shared that moment with you." Nishan Panwar