“We are taking it one day at a time,” I respond over the phone. It’s true, but also my standard response. It’s what I say when the truth is too hard to relay to the person who asked about my dying child. I can list the ten most common insightful questions with relative ease about the death of a child: How am I?, When is your child going to die?, Are you going to have a funeral?, Are you afraid of watching your child die?, Is your child in pain?, What have the doctors said?, Will you have another child?, How can I help you feel better?, Do you think your marriage will survive your child’s death?, What should we say? It’s not easy helping a friend with a dying child or after their child’s death. I hope this helps give you some insight!
Please understand that when you ask someone how they are doing before, during, or after their child’s death, they feel like they are being put on the spot. For example, if I say I am doing well, I worry that you will think that I am better and have moved on from my child’s death. If I say I am falling apart, I feel like I am weak and risk coming apart in public or on terms that aren’t mine.
There are just no accurate words to sum up that I am experiencing. I am a combination of all of the five stages of grieving: Denial, anger, bargaining, depression, and acceptance. Unfortunately, the struggle is that those stages aren’t linear. Meaning, you don’t experience them in order. Subsequently, as times goes on, people expect you to be “over” the loss and/or your child’s death. In fact, it’s expected that life is to become easier and not harder, but that’s often not the case for those who suffer the death of a child.
A long time ago, I read a magazine article about how it felt to have certain things happen in your life. One piece was about having cancer, another a heart attack, and so on. I remember being engrossed in those articles. It fulfilled not only curiosity but my need to understand the world around me. It’s ok to be curious about what others are experiencing, even the death of a child, but there is a right way to do it and a wrong way to. I’d be happy to fill you in on the top ten most insightful questions people ask me about our child that is in the stages of dying.
Insightful Question #1: How am I?
I am a firestorm of four of the five stages of grieving. I am continually in that moment between inhaling and exhaling. I must remind myself that I need to let my breath go so that I may inhale again. I am under siege from stress and anxiety. The constant fight or flight response has me on edge. I am pretty convinced that if I think too much about what is happening, that I would surely vomit. I am crying one moment, and smiling with gratitude for the deep love I have for my many blessings the next.
I am memorizing every angle of her face, the feel of her hair, and the smell of her skin. Hugging and holding her is both emotional and soothing. In short, I am ok, but I am not fine. I probably will never be fine again, but I will be ok.
With that said, I would rather someone ask how I’m doing than say nothing at all. Often, I feel as if I am standing on the windy cliffs and yelling at the top of my lungs. Instead I realize that I am not yelling, but silently yearning for someone to understand what I need. The truth is that I don’t even know what I need. It’s like yelling into the void to fulfill a void in my life.
There is no acceptable answer that could encompass all the difficult emotions that you experience when your child is dying. I wear my grief like a heavy coat. It’s weight is felt with every step I take along this journey. The challenge is to find a way to keep balance and happiness in our lives not in spite of our circumstances but because of them.
Insightful Question #2: When is your child going to die?
Of course this is said much more tactfully and typically with much hesitation. For example, “Has anyone given you a timeframe of sorts?” This is by far one of the most crushing questions. When people ask this I feel as if all of the air was instantly sucked out of the room, the pressure behind my eyes builds, and my mouth goes dry. It’s an honest question, but the question is so very very hard. By giving an answer, it forces us to look at the end and we are desperately trying to focus on this exact moment and nothing more. Answering this question may push us past our ability to cope.
With that said, we did receive a book from hospice on the stages of dying and death of our child. The truth is, death it much like grieving. It’s fluid and the path each person takes is unique to them. Death and dying don’t always travel from Point A to Point B in a predetermined way. There are signs though that your loved one is passing.
Signs of Dying:
- Becoming easily tired.
- Not feeling hungry and eating.
- Becoming quiet and not participating in family life.
- Sleeping more and more.
- Seeing friends and family that have passed away.
- Increased sweating, congestion, and confusion.
- Decrease in blood pressure and urination.
- Eyes that become glossy or teary.
- Irregular breathing.
- A pulse that’s weak.
- Can’t be woken up.
Insightful Question #3: Are you going to have a funeral?
Instead of asking this question, ask if you may be assigned a task at the funeral. If there isn’t one, you will be informed. If there is one, you will be of great help to someone who is experiencing severe emotional distress over their child’s death. In actuality, many funeral decisions aren’t made ahead of time.
It is an overwhelming and distressing process to plan for a funeral when it is your child that is dying. Planning your child’s funeral feels as if you are accepting their fate, and that’s no small task. Volunteer to go with your friend or family member to the funeral home, church, graveyard, florist, or to pick out a headstone. It’s an act of love that won’t soon be forgotten.
Things you may volunteer to do at a funeral:
- Help arrange music or musicians.
- Order or arrange flowers if desired.
- Ensure proper placement of flowers.
- Put together pictures for the service.
- Field questions regarding donations, help the family may need, and their wishes.
- Offer to bring them their child’s ashes.
- Offer to pick up the guest book, encourage guests to sign it, and/or bring it to the family’s home afterwards.
- Hand out boxes of tissues to those in attendance.
- Create an assist in paying crowd fund for expensive funeral and burial expenses.
Insightful Question #4: Are you afraid of watching your child die?
Please don’t ask anyone this again. This is a painful question and the answer is typically obvious. Yes. Yes, a thousand times, yes. My heart aches just thinking about my child’s death. Despite this, my bigger fears are what happens afterwards. The emotional toll will be high for our entire family. We will spend the rest of our lives healing from this loss.
Insightful Question #5: Is your child in pain?
Yes. Please do not use this fact to point out that they are no longer in pain after my child’s death. While correct, it doesn’t mend the pieces of my broken heart. Parents of terminally ill children are often highly criticized for their choices managing their child’s healthcare. More specifically, they face judgement for the use of pain medication and end of life decisions. These choices aren’t come to lightly and are painful to make. Out of self-preservation, you may get a sugar-coated or evasive answer to this.
Inquisitive Question #6: What have the doctors said?
This is typically a safer question than most. The factual realm is easier to deal with than the emotional one. The best way to ask this question is, “If you are in a good place, may I ask what the doctors have said about (fill in the blank)?” It helps to be specific. It’s best to avoid about asking about life expectancy. Another way to ask this is, “Do you have any new medical information about your daughter/son?”
Inquisitive Question #7: Will you have another child?
No. Please don’t ask anyone this question ever for any reason. It’s intensely personal. Just no. The death of a child is a life changing event. Having another child will never replace the child that passed away. Enough said.
Inquisitive Question #8: How can I help you feel better?
My arsenal is friends and family who are standing behind and beside me as I move forward into a scary future. However, I am only just beginning to have a full picture of how dying is going to impact our family. There is no way to stress enough, just how much your friend or family member will need you after the loss of their child. They will not ask you for help, especially with the hard things. You will need to volunteer or just do it. Most of the time, those that are grieving aren’t able to express what they need or don’t wish to inconvenience those around them.
Ways You Can Help After the Death of a Child:
- Offer to do yard work.
- Do laundry.
- Pick children up from school.
- Bring flowers to the gravesite.
- Help clean.
- Bring over groceries.
- Babysit the other children so that the parents may take a moment to breathe and bond.
- Bring coffee, tea, or hot chocolate.
- Send cards to let the family know you are thinking of them a month, three months, a year, and beyond.
- Write thank you cards and mail them.
- If you can’t do that, drop off blank stationary and stamps.
- Field questions for the family, but relay who inquired back to the family so they know.
- Invite the family to social events as you normally would, even if you know they will decline.
- Do not disappear because you don’t know what to say. Call, text, email, send a card, and spend time with the grieving family. Otherwise, they experience a secondary loss of community and friendship.
Inquisitive Question #9: Do you think your marriage will survive your child’s death?
Despite being debunked, the myth that marriages fall apart at a high rate after a child’s death is simply not true. That is to say, cracks in a marriage are exposed as both parents wind their way through the grieving process. Ultimately the loss typically ends up bringing the parents together. After all, nobody else loves the child like you two do.
Tips on Keeping Your Marriage Together After Your Child’s Death:
- Your mental health before, during, and after your child’s death needs to be a priority. Both parties should seek help from a certified counselor alone and together.
- Focus on communication. Mind reading isn’t a part of most people’s bag of tricks. If you are hurting or need something specific, don’t expect your partner to know.
- Make sure that you are taking care of your basic needs. It’s hard to function as a team if you are tired and hungry.
- Say you are sorry. When you make a mistake and don’t handle a situation very well, apologize. It helps.
Inquisitive Question #10: It seems like we can’t say anything right to someone in your situation. What should we say to someone whose child died or child is dying?
Start off with knowing that your goal is not to take away the hurt of a child’s death, but to not add any additional pain. That sounds like a given, but like anything else in life, it’s easy to say the wrong thing when you don’t know that it is even wrong. Please don’t let this deter you from saying something, because the wrong thing is better than saying nothing.
As far as what to say and what not to say, there is an excellent list of land mines and replacements in the book What Grieving People Wish You Knew About What Really Helps (and What Really Hurts,) by Nancy Guthrie. It’s the best nine dollars you can spend to avoid seriously hurting a friend or family member in grief.
As far as I am concerned, I prefer, “I am sad with you, and I am sorry this is happening.”
What I say when asked about my child dying:
If you ask me how I am doing you could get the following answer, “I’m ok. Just taking things one day at a time.”
What I mean when you ask about my child dying:
The real answer is more like, “I’m dang exhausted because my daughter was up for an hour and a half last night seeing dead people. I put the milk in the pantry instead of the fridge this morning, because I can’t think properly these days. I want to have a complete come apart, but I don’t have the time right now. I’m terrified, angry, sad, and a mess, because my child is dying. Thanks for asking.”
We know we are a hard lot to hang around with, those grieving their child dying or child’s death. It comes with an emotional toll and big feelings. The truth is, being there for a friend in the worst moments of their life is an immense gift to you both. Your compassion will deepen, your heart fill, and your soul fill.