“There’s no satisfying end to this, for anyone,” he said, looking at me, in a sleep-deprived, drug-induced, brain-swollen daze. “There’s no good end.”He continued: “Thank you, you’re a good author and thanks for the experience. There were some good characters in this.”Then he added: “Give me a hug. You don’t deserve this.”
"[P]ediatric palliative transport” [is a] a rare but growing practice that aims to give families choice, control and comfort at the end of life.
Palliative transport lets families move critically ill children from the hospital intensive care unit to their home or hospice, with the expectation they will die within minutes to days after removing life support.
A collection of photos of Anthony Gabriel Brescia-Connell, who was 16 when he was transported from Boston Children’s Hospital to his home in Medford, Mass., where he died on March 3, 2011, surrounded by his family and beloved stuffed animals. (Photo by Kayana Szymczak for Kaiser Health News/Photo by Kayana Szymczak for Kaiser Health News)
It means “having parents go through the hardest thing they’ll ever know — in the way they want to do it,” Nelson said. Boston Children’s has sent 19 children to home or hospice through palliative transport since 2007, she said.
These final journeys — also offered by the Mayo Clinic, Children’s Hospital of Philadelphia and Kentucky Children’s Hospital — can involve elaborate planning, delicate transfers and even long helicopter rides. In some cases, families took a child far from home for a last-ditch effort to save their lives.
At the Mayo Clinic, palliative transport has helped culturally diverse families carry out end-of-life wishes for their dying children. In one case, a newborn girl rode 400 miles by ambulance to return to her Amish community, where she was extubated and died in her parents’ arms, in the company of her 11 siblings. In another, an 8-month-old Native American girl traveled 600 miles by air and ground ambulance to her rural tribal reservation, where she could participate in end-of-life rituals that could not be done in the hospital.
I fought back tears. Delivering this message was the hardest thing I’ve ever had to do. But I had to stay calm and say more. I had to find impossible words — words that would bridge the gap between life and death and make his predicament palatable. 3 Magic Phrases To Say To A Dying Person spilled out. It has became a mantra. Here is what I said to my distressed and dying child, as lovingly and reassuringly, as possible:
“You will not be alone. You will not feel pain. We will be okay.”
The reason I’m putting this out there now is that the intended audience for this book was to be my fellow parents of very sick children. They were always so tired and sad, like ghosts, walking the halls of the hospitals, and I wanted them to know someone understood and cared. I’d still like them to know that, so here these few pages are, for them. Or for you.
But I can’t write that book anymore because our family’s story has a different ending than I’d hoped for. Maybe I’ll write a different book in the future, but now my responsibility is to my family and myself as we grieve our beautiful Henry.
Nearly four years to the day she was diagnosed, her oncologist tells you there’s nothing more he can do.
You take her home and let her live her life. You put your own life on hold so you can drive her to school, to parties and to the performances she loves: She’s a musician, and you live to hear her beautiful voice.
She has one final scan. She’s been struggling for breath. She’s been extremely pale. She’s been getting fevers every night that spike as high as 103. You learn that the tumor near her left lung is now the size of a grapefruit. It’s close to her heart. The oncologist says he’s sorry. He does not schedule any more scans. He does not schedule any more follow-ups.
She lives for three months longer. With the help of hospice and palliative care, she is able to stay home. She goes to a final birthday party, meets her friends for a final lunch date. She texts her best friend the night before she dies: “I’ll see you this weekend.”
It is March 22, 2017. The outside world is gray and cold, covered with snow. You and your husband sit beside her in her bedroom and listen to her labored breathing. You tell her you love her. You tell her you’re proud of her. You tell her you’re sorry you couldn’t save her. You tell her it’s okay to go.
She opens her eyes — those big blue eyes you know better than your own — and sighs one last time. Then she’s gone.
Four and a half years ago, I birthed beautiful, perfect twins. One ended up very sick with an untreatable genetic condition. She functioned as a newborn until she died before her third birthday. All of it was soul-crushing. I considered killing myself, but I didn’t, and I survived. Not only have I survived, but I am happy. Yes, at times, I am sad and miss my daughter, but I love my life and I am blessed and I’m pretty much OK 95 percent of the time. So what’s the problem? I want to move on. I could never forget my daughter, but I don’t want to spend the rest of my life always taking a moment to remember the daughter I lost. I lost myself when my daughter was diagnosed and we were fighting to save her. I lost myself when she died. I am finally me again, and I want to be able to just live my life without judgment that I don’t miss her enough. For example, for our second Christmas without her, our family scheduled a holiday photo shoot with our remaining children. Some people commented that they wish I had done something in that photo shoot to include her. Am I wrong? Should I live my life under an inescapable cloud? If I’m not wrong, do you have any advice on what I could say to these people? I understand they miss her. I miss her too. But I shouldn’t have to miss her for every single second of the rest of my life, should I?
First you get your coat. I don’t care if you don’t remember where you left it, you find it. If there was a lot of blood you ask someone to go quickly to the basement to get you a new set of scrubs. You put on your coat and you go into the bathroom. You look in the mirror and you say it. You use the mother’s name and you use her child’s name. You may not adjust this part in any way. I will show you: If it were my mother you would say, “Mrs. Rosenberg. I have terrible, terrible news. Naomi died today.” You say it out loud until you can say it clearly and loudly. How loudly? Loudly enough. If it takes you fewer than five tries you are rushing it and you will not do it right. You take your time.
...
When you leave the room, do not yell at the medical student who has a question. When you get home, do not yell at your husband. If he left his socks on the floor again today, it is all right.
For all my gripes with condolence cards and what to do with them, I, too, have sent them since Ellora died. I make it a point never to write sorry. I’d hope the sheer act of sending the card would do that job. And I only write what once gave me strength: “I send you prayers and wish you fortitude.”
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.Dr. Moon's "remarkable" conversations with her daughter about death and heaven are touching and inspiring. She makes sure that Julianna feels safe and loved. We thank Dr. Moon for sharing her story and keep the family in our thoughts.
Continuing bonds are a common, healthy, and enduring element in the resolution of grief. – Dennis Klass et al. 1996
The death of our children is one of the most disempowering events we will ever experience. In the aftermath, we can choose to empower ourselves by consciously engaging in activities that deepen the bond with our children.
Here are some suggestions:
Find an item that reminds you of your child. If it is a blanket, wrap yourself in it, or cologne or perfume, spray yourself with it. Whatever item you choose, find a quiet space and time and invite your child to spend some time with you.
Reflect on the great times that you shared and wish to share in your new relationship. Light a candle or burn some incense.
Look at a photo album, or photos that you have on your computer. They can be pictures of friends, family, or pets. Share your specific memories of those photos with your children quietly or out loud, whatever works for you.
Take a walk in nature or a leisurely drive. Bring your child’s picture or your unique linking object with you. Allow the positive memories to flow.
From David Roberts on Open to HopeChoose an activity that reflects the relationship that you shared with your child when he/she was alive. Be aware of what you experienced. Did you have a sense of peace, a chill or chills or discover other evidence of your child’s presence?
