They Just Don't Get It.

Angela Greco's story is one that speaks not only to the sacredness of the Prouty Garden, but to the future of Boston Children's Hospital. Is the hospital leadership maintaining the same compassion for its patients and families that we have come to appreciate from the incredible doctors and nurses? 

It was July 12th, 2015, just 5 days before the 2 year anniversary of my son, Jason's, death. Just like last year and the many times in between, we planned to make a 4 hour drive from New York to visit an incredibly special place - the Prouty Garden at Boston Children's Hospital. It may seem odd to drive 4 hours just to visit a garden, but maybe the following will explain.

Boston Children's Hospital is such an extraordinary hospital for so many reasons. Mainly because it offers children some of the best care in the country and more often than not, it is the "last stop" for terminally ill babies and children. But in addition to the exceptional staff and state-of-the-art facility, BCH has this magnificent garden in the epicenter, or the "heart" if you will, of all its buildings. This garden is spectacular with beautiful bushes and trees, an open field with statues and a fountain, and many secluded areas in its shady corners. It is truly the "heart" of this hospital because it is visited by everyone; patients, families, staff and anyone in between.  It is a magical place that offers a level of healing that cannot be found anywhere else. Trust me, I know.

My son, Jason spent 4 months at BCH. In February of 2013, he and his twin brother, Justin, were born 2 and 1/2 months early at a local hospital on Long Island in New York. Within 48 hours, Jason's condition started to rapidly decline due to a catheter that was misplaced in his body, puncturing his liver and causing him to go into liver failure. After a month of unsuccessful treatment elsewhere, we had Jason flown to Boston Children's Hospital.

During the 4 months Jason spent at BCH fighting for his life, I was there with him almost the entire time. The nurses would encourage me to leave the building to get some fresh air, but the only place I would allow myself to go was the Prouty Garden.  I'm so grateful that I took those opportunities to spend time in such a beautiful place. I think I would have lost my mind listening to all the machines and monitors all day long.  

Eventually, Jason's progress had hit a wall, and we knew it was the end.  On his last night, the only request my husband and I had was to bring him to the garden. It was a challenge because Jason needed so much equipment, but the nurses and doctors made it happen for us. We were grateful. It was the only place he'd ever been, other than a hospital room. It was the only time he was ever able to feel fresh air. It was the only time he ever saw moonlight and heard crickets. It was the best night he ever had. 

An hour after Jason's visit to the garden, he passed away in my arms.  It was the most tragic moment my family will ever experience, but I have peace knowing that he was able to be in that garden, even if it was for just a brief time.

So now maybe it has become more clear as to why my family would drive 4 hours to visit a "garden." It's not just any old garden. It is a place that is so sacred and so special to my family and to many others as well. And even though we only get to go a couple of times a year, it has become a family tradition, in honor of Jason. 

We have a "spot" we like to go to. The spot we took Jason to on the night he died. My husband and I usually reminisce about how incredible the staff was that night and how brave our older son was as he read a bedtime story to his twin baby brothers. We recall how beautiful Jason looked as the moonlight twinkled on his face and how the warm breeze messed with his hair.  I try to take in some deep breaths as if I were reliving the evening and remember the last moments we were complete, as a family of five. Every emotion comes flooding back and I always have a good cry. Some may think this would be difficult for us, to go back there and relive the moments before our son died, but it's quite the contrary. It brings us extreme peace. It allows us to remember him fully in the place where he had the best moment of his short life. It allows us to feel gratitude for the love and support he received that night from everyone who knew him. It allows us a chance to make Jason's life more real to his brothers in a beautiful and meaningful way. Being there makes us feel closer to him because we never got a chance to bring him home.

 Just a few weeks ago, on that Sunday, July 12, as I had mentioned, my family had returned to the garden for our Anniversary visit. When we got there, we walked into a hospital that used to feel so familiar, but now looked completely different. When we went to the font desk to check in, we were told we couldn't go into the garden. We not longer had a patient there and the garden was not open to the public. And even after I explained why we wanted to go, we were still refused access.  

We felt devastated and defeated on so many levels. For one, we knew that there was a chance that the garden would be gone soon. Would we ever get to be in that comforting place again? It was so difficult to know that the most sacred place for us was just a few short corridors away, and we couldn't get to it. And that just behind the people at the front desk, who were given "heartless directives," were the most caring and compassionate medical teams we'd ever met. People who were such an important part of our lives during such a crucial time. 

I couldn't understand the logic. We only wanted to be there for a short while. And now, not only did we have to say goodbye to our son, we have to say goodbye to the only place that brings us comfort...without any warning. And in addition to the possible destruction of this beautiful place of healing, the people who need need it the most are not able to embrace it while it still actually exists.

I'm really not sure who is making these decisions about the garden, but it is clear to me that they just don't get it. They are clearly not seeing all the patients enjoying the fresh air each day. They are clearly not noticing the staff using the garden to escape their stressful shifts for a brief break. They are definitely not present when families choose to bring their child to the garden to spend their last moments together. I hope that one day soon, they begin to see all of this more clearly, because not only is my heart breaking, the hospital's heart is too.