So much has happened since I posted a year-and-a-half ago. Most of that delay has simply been because Peter has been busy - medically, being a kid, and as part of a semi-large family.
In the following months, I may eventually update more to his blog, or let things just remain as they are. For now, I share with you portions of Peter's obituary. The photo on the rooftop of the hospital captures his smile and enthusiasm throughout that whole last day. We miss him terribly.
On August 9, at about 3 AM, Peter Joseph Michalski passed away at the age of 13.
Peter was preparing to enter seventh grade this year with his younger brother, D. This would have been their first school experience having been home-schooled in part due to Peter’s frequent medical travel and a compromised immune system. His constant companion and best friend, D, was looking forward to accompanying his big brother on this new adventure.
Peter's life-long medical and hospital journey began at four months old with three emergency admittances and nearly a year-long hospital stay. He had multiple major surgeries in that time related to his liver and intestines and resulting complications. There were many more subsequent operations and procedures in the years following, along with several years of in-home nursing care and therapies.
Peter’s medical care was transferred from Philadelphia to Boston Children’s Hospital after more than half a year inpatient in order to be part of a trial therapy with Omegaven, an innovative lipid therapy for those requiring IV nutrition. His ongoing care and hospitalizations required travel to Boston every six to eight weeks with the doctors, nurses, and support staff becoming his friends and a caring extended family.
Peter’s great interest in life was the globe he wished to eventually travel. Early on, places and cultures captured his imagination and through a continual study of maps and atlases, he achieved a starling mastery. He visited places vicariously through the trips of others and their photos, inquiring of details with probing questions about the number of floors in a particular building, whether they had seen a prominent landmark, and of course, what they ate along the way. He had committed to memory the nations of the world, the capitals, notable architecture, and an array of facts to such an extent, that, though an unlikely contender with his disarming playful and cheerful manner, he handily won a geography bee locally.
But, it was people he really loved, and it was hard not to love Peter back. He had an authentic interest in others and would never tire of another person’s presence. He made everyone feel like they were interesting and worth listening to. He wanted people to know him, who he was, and what excited him about life and the world that many take for granted. As someone from Boston Children's Hospital noted, he was like the Mayor of the hospital, everyone knew him and faces lit up as he would recall the details from the last time they talked, beaming with a wide genuine smile.
He touched the lives of all who encountered him including people around the world who were aware of his illness and who sent prayers and support.
As Peter was being wheeled into what would have been a multi-organ transplant surgery that never had a chance to proceed in full, he was chatting with the doctors and nurses about where they might be traveling next. He was happy and excited going into surgery, he had no fear, he was not in pain, and most importantly, he was at peace with God surrounded by his family and many others who loved him.
Peter was the fourth of five children.
He will be deeply missed. Peter Joseph, pray for us.
In lieu of flowers, donations to the Oley Foundation in memory of Peter would be appreciated. The Oley Foundation is a large support network for people who depend upon IV nutrition and/or enteral tube feeding, of which Peter depended for most of his life. Peter found great pleasure in attending one of their annual conferences last year, and meeting dozens of other people on IV/tube feeding, just like himself. https://oley.org/donations/donate.asp?id=8905
