There are a great many benefits to working for a Catholic college, one of which is an unusually long Easter break that allowed me more face time with Lydia in Boston. I arrived on Wednesday with no travel problems, and was greeted by an awake, and vastly improved little girl, shaking her rattle and reaching out to grab my face.
We made an attempt at extubation, which seemed to be going great. For one hour, she wore the “Darth Baby” C-PAP mask and was breathing mostly comfortably. Minutes before I returned from lunch, her breathing rate crashed, her oxygen saturation plummeted, and her heart rate slowed. It took the team several minutes to even bag her, due to some unknown airway blockage. After a minute of chest compressions and intubation attempts, they got her breathing tube back in, and she was conked out the rest of the afternoon. Later that evening, she awoke and was ready to play as though nothing had happened, although she did seem to wonder just why the heck she had a tube in her mouth all of a sudden.
The meeting with the surgery and cardiac team was useful. They are pleased and impressed with the improvements in her lungs and vascular performance since the implant of the devices in her pulmonary arteries, and seemed reasonably certain that she would be strong enough to restart the procedures to grow and connect her esophagus within the next couple weeks. Such is the pattern of health and heartbreak; we fight to regain her health and vitality only to devastate her little body once more. Knock her down; she’ll bounce back up.
In the meantime, Wyatt and Ava spent Easter in Trenton with all the grandparents (and of course, great aunts) pitching in their parts to keep them fed, entertained, and reasonably out of trouble.
During this trip, I was moved by the inexplicable kindness and generosity of relative strangers at every turn. A friendly sushi chef offered me his email address and asked me to send a photo of the kids so he and his wife could pray for them. A DJ and his girlfriend at my usual watering hole offered up the use of his entire apartment and motorcycle when I’m next in town (he usually stays with his girlfriend, and assured me complete privacy and access), and today, at dinner, a gentleman playing trivia at the bar gave me his contact information and said to contact him whenever we are in town; offering again room and the discerning advice of a neighborhood local.
Most striking, however, was the guest speaker at Christ Church Unity, only blocks from the family housing at which we stay. Author Terry McBride shared an unbelievable story of triumph over hardship, as he overcame devastating infections, the likes of which had never been seen. 27 horrific surgeries over 11 years, removing infected tissue from his organs and muscle, scraping infected bone from his spine and ribs, being told he would probably lose the use of his legs, his bowels, and become sexually impotent; the doctors told him he could be assured that he couldn’t expect to “come out of this one whole.” The name of his book is “The Hell I Can’t.” He is whole and healed, and living the life he imagines. We had a great conversation about Lydia’s peculiar journey, and I was grateful to find her kindred spirit on such a random, but much needed occasion. I’m already halfway through the book.
Due to our circumstance, we are liberated by the necessity of living in the present moment and being grateful for each moment and minor milestone we can witness with our miraculous family. We cannot dwell on what has passed, and the conditions on the ground change too rapidly to hope to predict the future. Every day is a fresh new adventure, and provides its own shares of hope and heartache.
May your Easter week be a time of reflection and renewal, of joy and creation.
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