"I'm sorry, there is nothing left we can do for your little girl. I think you should take her home and make some beautiful memories."
The words left me stunned and reeling. I felt sick to my stomach and my heart shattered to the ground. These are words that no parent wants to ever hear. After six months in the hospital, surgeries, endless blood transfusions, an emergency tracheostomy and ventilator, and endless medications we had hit the end of a long hard and painful road.
We entered hospice care and since then the reactions from others varied from our sainthood to anger at just throwing the towel in. Some of the comments and actions have been just as painful as the emotional seesaw we have lived on the past six months.
It really started me thinking. In a culture at times that wants to remain eternally youthful death and especially the death of a child is hard. From my perspective this is a new level of hard as well. She is my joy. And some things you may not want to say.
1. Don's say, " You are giving up on your child." I am NOT giving up on my child by placing her in hospice. I am allowing her to advocate for her needs and listen to her body. My daughter is a warrior. She has been through so much in her brief nine years. We are not quitting or digging a plot in our backyard as I type this. We are advocating for her and allowing her to call the shots. By doing this she is comfortable, happy, and able to participate in her daily routines. It hurts when you think we don't care about our child. Hospice is not a decision that is taken lightly.
What you can say instead, " I see that your child is enjoying themselves and their activity. Is there anything I can get (or do) for them to help them be comfortable?" By doing this you are letting parents know that you care about their child's comfort and are willing to help soften the blow on a hard and sometimes painful journey.
2. Don't say, "You are such a saint." It makes me uncomfortable when you exclaim how wonderful we are and martyr me. I am scared. I am human. By labeling us as a saint you can put undue pressure on us to be saintly at all times and can cause us to stuff down our feelings. I need to be me, not the souped up version you think I am.
What you can say instead, " I am here to listen to you anytime you need. You can tell me anything and I will support what you are feeling." By saying that you give parents a chance to openly express fears, grief, and frustration. I can be who I am safely with no pressure.
3. When I say I don't need anything now that may not be true. It's not that I am lying, I just have a lot on my plate. I am trying to navigate hospice, plan a celebration service, tend to my other child, husband, pets, cook, clean and make appointments. I'm exhausted and just can't think of one more thing.
What you can say, "I see you have so much on your plate. What is your favorite place to eat? I am sending you a gift card." Or, " I am getting you housecleaners for a while so you can focus on your family." You are only limited to your imagination. You can offer to come over (if the family is comfortable with that) do laundry, help with pets, kids, lawn care. The list is endless. By taking a few things off our plates it helps us focus on our family.
4. I am overwhelmed with final arrangements. I have a list of funeral homes and a sheet of paper simply labeled Celebration. Every time I pick up the phone to call a number or a pen to write an idea I cry. This is super hard. I need help planning and don't know where to go to make that happen.
What you can say, "Can I help you by making some calls to find out more information?" If a family is comfortable with it you can help plan or help them locate a planner for final arrangements.
5. I feel isolated from our community. In an age of social media on demand 24/7 it wouldn't seem possible but it is. People have sent messages and I know we are loved, but some of us need actual human contact for support. COVID has really put a damper on this.
What you can do. Show up. If the family is comfortable with it come over. Bring tissues, a beverage of the family's choice and a hug. Call on the phone. Even if they can't answer. Just letting us know you are there is powerful and brings us a lot of strength.
This is not a complete list, but it is a starting point. Every family will have their own needs and personal preferences. But maybe this will give you a little nudge in the right direction. By showing us you care and supporting our family during this new season you are giving us time to focus on what matters most. Our amazing warrior.