Blessed. There are many definitions as to what that word means, subject to personal preference, spiritual or religious context, or slang, and oddly they can be completely opposite, ranging from ultra holy to damned. When I picked up this shirt at my neighborhood Target a few months back, I had something somewhere in the middle in mind for myself, thinking more along the lines of “endowed with divine favor and protection.” Now, there are definitely days that feel more blessed, as in “rotten, blasted, pestilential, wretched,” on the whole, despite all of the challenges, I am beyond blessed, of the “fortunate, lucky, happy, joyful” variety.

Being in the pediatric ICU for 11 days, now, with an anticipated 14+ more to go, I have gained even more perspective and understanding of what it means to be blessed.

First of all, the fact that I am sitting here, next to my son, as we desperately desire a night free of fevers, ICU-induced hallucinations, oxygen saturations that don’t dip below 85%, and full of sleep so that his surgery to put in a tracheostomy tube so he can finally get this intubation tube out of his airway, is evidence of my being blessed. I am fortunate that I have a job that is flexible, and being my own boss and all, I have not had any negative implications of not showing up to work.  I know that other families are not so lucky, and neither are their sick kids, as I have walked repeatedly past rooms in this unit where tiny babies and children are alone, with no tiger parent there to provide comfort, hold hands, reassure, ask questions, advocate, and ensure that their little one gets the best possible care health insurance can pay for, as I am on my way to and fro the suite G and I have been roomies in, 24/7 throughout this hospital stay.

Sidebar note about insurance: I am also blessed to have not only good primary insurance for my kiddos, but also secondary state insurance that picks up all of the rest of the bill and covered his first jaw surgery that the primary insurance would not. When Giacomo walks out of this ICU in a couple of weeks, he will be doing so with a handsome new jaw and a spiffy new airway that I estimate will literally be a “million-dollar-mouth.” And I won’t pay a blessed penny of it. See?? Pretty blessed, right? And this is my PSA to you folks out there who are wondering if your kid might qualify for special services or medical assistance and if it’s worth the hassle and the paperwork and the fight–it is. Very few really good things in life just land in your lap without some blessed effort, so give it a whirl and you just may reap some blessed benefit.

Secondly, the fact that I am sitting here, next to my son, who is ALIVE, is reason enough for me to feel blessed as hell. Yes, I watched him nearly die right before my eyes, my hands on his chest that would not move with the inhalations of breath, begging him to stay with me, at the hands of people who didn’t listen to my urgings to believe my instincts. However, when he came back, and I needed a moment to catch my own breath, I stepped out of this room and I stepped into the family lounge around the corner. On my way in, I noticed a handful of people outside the room down the hall, and I sensed that whoever they were sitting vigil over was not doing well. As the days passed, more and more people came, and I saw their sadness, as they began to fill the hall as well as the lounge, bringing with them a constant stream of food to nourish one another during their mourning. The more people that came, the worse I knew it was. And then, on the same day my son spiked a super high fever, I learned that the little one surrounded by this family had become septic, something I had feared, but then was relieved (and blessed) to learn G’s infection was only in his trachea, not his entire body, as was the case for this little one down the hall.  A couple of days later, the supporters multiplied, as did the food that they provided for one another. A religious leader appeared, and I knew that the end was near.  I could offer nothing to this family but my aching heart for them, kind eyes to meet theirs, and a simple smile.

Then, the other morning, I went to the lounge to get hot water for my morning tea. Their food was everywhere, but they were gone. All of them. The patient room was being cleaned. There was no more vigil being kept. As I slept a few feet away from my son being kept alive on a ventilator, gaining strength for a surgery that should allow him to leave this ICU in one piece, someone else’s son passed away. And days later, that food is still there. It hasn’t been touched, and I wonder how long it will be there until someone from the cleaning crew finally accepts that they’re not coming back for it. The food-love connection that brought these family and friends together in this ICU came to an abrupt halt, a halt brought on by the end of this child’s life.

It may be worth noting that this family was not white. They were of another culture, one that clearly believes in supporting each other in difficult times, one that believes in the community that needs to exist for us all to thrive, even when the darkness comes. I was in awe of them, often brought to tears just by their presence with one another. And then I remembered how truly blessed that I have been to have a community of support and food and love around myself and my family during this challenging time, especially given the fact that I come from a culture that doesn’t always do the best job when it comes to supporting and helping each other out. I am beyond grateful for not once having to worry about what I was going to eat, as the fridge in G’s room is full, as is an entire shelf in the lounge fridge, all with meals, goodies, and snacks brought to us by our community. We have been generously given money and gift cards to keep the nourishment coming, as we are not even halfway through this hospital stay, which will be followed by weeks of recovery as we settle into the new normal of a kid with a trach tube.

My blessed community is more than food and donations. It is the people who have checked in on me, via phone, text, and message. It is the people who have sat here with me, held Giacomo’s hand so I could take an occasional break for self-care or to spend time with my other kiddos. It is my other kiddos, who have brought me such joy, hugs, smiles, and peace in the precious moments that we have together when they come to visit. It is the school staff that has checked in on my kiddos to make sure they are holding up okay during this crazy time. It is the friends who have washed my laundry and brought me random items. It is my wife who is continuing to hold down the fort in our home and with our work. It is every single person who has been sending love, healing, support, and prayers from all across this planet, as one of my dear friends put it, “You are all constantly in my thoughts. I have this image of golden threads that are coming from all over the world creating a net to lift and carry you all through this. I hope you can feel it… we are all with you.” Blessed indeed.

I suspect the actual manifestation of this blessedness is far from over, and will likely evolve in the weeks, months, and perhaps even years, as I have gained such inspiration for not only my family but for My-Vida and the incredible work that we will accomplish for other families, who are sitting in Intensive Care Units right at this very moment, for those who will be someday, and for those who are struggling to find the fortune in the damnation that they have been blessed with by having a loved one with a chronic condition. I am blessed to have a voice, to be able to share it, and to be surrounded by people who continue to encourage me to do so. With My-Vida, I will do everything in my power to help families like mine and to offer them another definition of blessed, and perhaps one of my favorites: “bringing pleasure or relief as a welcome contrast to what one has previously experienced.”

“If you’re going through hell, keep going.” 

November 29th, 2021|Comments Off on “If you’re going through hell, keep going.” 

For last night’s midterm, I needed to memorize the definition of the word “trajectory,” as it relates to one’s life, stated as “Relatively stable long-term processes and patterns of events, involving multiple transitions.” As I