Pen's Legacy

Pen was born on July 19, 2013 at 4 am. From the beginning it was obvious that Pen was physically handicapped. She had a hair-lip and cleft palate. These were surgically correctable. But after 2 months the pediatricians became concerned about her development. DNA tests showed that she had a rare genetic abnormality: autosomal recessive spinal muscular atrophy (level 2), "floppy baby syndrome." Pen has never been able to sit, move her arms or legs, speak, or swollow, or even cough or sneeze.

Within her first year she required hospitalization 3 times. She was given a tracheotomy and she was attached to oxygen enhancement equipment from then on. She was fed liquid formula through a tube. Close members of the family took training to care for Pen and her like-support equipment.

Pen nearly died 3 times. On August 12, 2022 her equipment failed for a few minutes, long enough "to kill half her brain," the cognitive half. She was in the provincial Pediatric Intensive Care Unit until September 2 when we brought her home. On September 12 at 4 pm Pen's heart stopped and she died peacefully. Pen lived among us for 9 years, 24 days, and 12 hours.

The family and community are busy with funeral arrangements with a final service on September 15.

There is another, and more significant, part to Pen's legacy.

1. No one in the extended family has provided us as much chance to make merit through selfless caring for others. Folklore in North Thailand tells us that she was sent among us to do this, as no one else in the family has ever done in equal measure.

2. Pen was a teacher of patience by her example of dealing with fate serenely. Compared to her our troubles are puny and temporary. We had Pen right here in our midst all the time showing us that we are grasping at trivialities. This lesson she provided throughout her sustained lifetime. (She lived 3 times longer than impressed doctors had predicted, thanks, they said, to the family's dedicated focus on her. I want to give credit also to medical staff, and prayer groups, and to donors of help over the years.)

3. Pen was one of us. She was not an "other" or a strange character with whom we could choose to exist at a remote distance or to ignore. We learned not shudder as we tended to her every need. She could not provide for herself in any of the ways we take for granted. She demonstrated that we, too, are dependent on one another, and without all of us we are diminished.

4. Even her death has taught us something. We were surprised by grief. After the long hospitalization and the struggle we imagined Pen was enduring we thought her passing would be a relief to her and us. But the grief taught us that we will miss her, and that she was important. Life will be very different without her, especially for her mother and grandparents who were her primary caregivers.

Pen's legacy is the lesson that we leave the mark of our impact. We make a difference. We are not entirely gone when we die.