Hospice Survey…Really?

Sometimes, things that land in your mailbox are good, like a note from a dear friend. Sometimes, things that land in your mailbox are not good, like an overdue bill. Sometimes, things that land in your mailbox are just plain weird. Last week, I got a survey to fill out about the hospice care team that took care of Ravi in his final days. I did not fill the survey out for several days and was sorely tempted to crumple it up and throw it away. I finally decided to fill it out, as maybe it could help someone else.

Filling out the form was heartbreaking, as it took me through Ravi’s final week on this planet. I gave high praise to the nurses and aides who cared for him. I mentioned them by name and gave them exemplary marks for going above and beyond what they needed to do. The questions at the end of the form had me scratching my head. They wanted to know if I would use their services in the future. The options were: yes, no, or maybe. What I really wanted to tell them was that I sincerely hope I never have to use hospice services for a loved one again. The other question was: Would I recommend their services to friends or family? I had a sudden vision of my review showing up on Yelp, or some a social media page. Part of me was laughing, in a gallows humor sort of way, part of me was simply shocked. No! I am not going to recommend this hospice service to anyone that I know and love. I never want anyone to be in the kind of position where they are planning the last week of their child’s life. I never want a parent to go through the heartbreak that Robert and I have been through. Fortunately, there was a space at the bottom of the survey to make additional comments. I gave high praise to the nurse that walked us through that final, horrible night. I told the hospice agency that I was not going to recommend their services to anyone else as I am highly superstitious and do not want to pass on bad luck.

As I said before, many things pass through your mailbox. Some are good, some are bad, and some are just plain weird. I hope that somewhere in the universe Ravi is running free, cured and whole. I hope I do not get any more weird mail for a while. I hope that none of my readers get any mail of this sort.

I am going to pivot here. For years, this was a blog about autism and Ravi. Thank you to my dear followers who kept up with us for so long. Though I deeply miss and grieve Ravi, I do not want him to see what our country is on the cusp of becoming. I fear for our marginalized groups, the poor, those with differing abilities, those who are LGBTQ, those whose skin color may be different from my own. I will still talk about autism, and at times, osteosarcoma, as these are very important issues to me and to my family. But, as I pivot, I want to be a voice of hope, I want to be a voice of change, above all, I want to be a voice of kindness, especially to folks to whom kindness is rarely extended. Ravi is no longer with us, but his legacy will live on. I always fought for my offspring and for issues that I hold dear. I hope, my readers, that you will continue with me on this journey. Be a good human, do it for Ravi. Peace, Harriet.