A heartbreaking story ...
Our daughter, Julianna, is a funny, smart and beautiful 4-year-old who happens to have a severe neuromuscular disease.
In 2014, we had three PICU admissions for respiratory failure. She endured countless procedures and spent weeks at a time trying just to breathe. She got weaker with each admission. Eighteen months ago, she could walk with a walker. Today, she has a hard time sitting up and requires BiPAP (noninvasive ventilation) around the clock.
Last fall, we made the difficult decision to enroll in hospice. It didn’t feel right, but we were told that we could revoke it at any time. The plan was to try it out, get more support at home and go to the hospital again if she got sick.
A few months after we started hospice, Julianna made it clear to us that she does not want to go to the hospital again. Like so many kids who have had to face life-threatening illness, she is wise beyond her years — but she is still only 4 years old. I do not think that she will survive another illness, especially without aggressive intervention.
Julianna understands this too. We have had some remarkable, uncomfortable, humbling conversations about heaven.
Story is here.