Dying with Small Children Around

Going Through my Sister’s Transition with her Small Children

When my sister Maia was diagnosed in 2010 with acute lymphatic leukemia, her children were 3 and 8. For four years, Maia struggled with chemo, radiation, receiving a bone marrow transplant and stem cells. She had an iron will to live and much support from her husband and me. For two years it seemed that she had made it. When she died this summer in Germany, she was 46 years old, her children were 7 and 12.

Throughout the ordeal, Maia tried to protect the children as much as possible from the constant possibility of her death (listening to the doctors, her survival chances were 5%.) Maia had always been a believer in Western medicine and didn’t put real trust in alternative methods. When they told her this April that she would die in 2-6 month, she agreed to “play for time”, receiving blood transfusions 2-3 times a week and a chemo every 2-3 weeks. To have as much time with her kids as possible.

My sister was desperate. Her quality of life deteriorated despite her many attempts to “act normal”, especially in front of the kids. She was adamant not to tell the children she was dying. She believed that there was time enough to tell them when her process was further along and the kids could see for themselves. At this point she still ran the household as much as she was able to, took the children to play soccer, no matter how weak and tired she felt. Many psychology books advise to tell the children as soon as you know but my sister made us promise we would respect her wish and not tell them yet.

I spent as much time with her as I could. Eventually we went for a three day holiday into the mountains with the closest family and a few friends. We knew this was going to be her last trip. Nobody had told the children. Of course they were aware of her increased hospital visits and blood transfusions. They witnessed her losing weight and the many bruises on her skin as is typical for leukemia. Her husband and I wanted to tell the kids, worrying she might have sudden random bleeding from her nose, ears, mouth as had happened before and is common with end-stage leukemia. But Maia asked us again to hold off. Despite the tension and underlying sadness, we had a beautiful time in a wooden mountain hut I will never forget. Today I wonder if she was right to wait.

A few days later, Maia was in the ICU, with a sepsis, pneumonia, ear infection and a painful throat infection that didn’t allow her to swallow nor eat. She was on morphine and came very close to dying. The kids were on holidays, not (consciously) knowing of their mom’s serious condition. After this experience, the fathers of her two children (who had become good friends) decided to tell the children regardless of Maia’s wishes. They were too worried to be away on holiday with the kids, pretending “all was ok”, while she might die in hospital. We didn’t want the kids to feel “out of the loop” and to later hold resentment against us. Children need to process everything in their own time and a chance to say good-bye like everyone, even if not in so many words.

The kids were told by their respective fathers there was a “possibility” that Maia might die. The kids were very quiet for an hour but children have amazing self-healing powers and they played soccer with their friends later the same day with great enthusiasm.

After 2 weeks in the ICU, Maia requested to be brought home. She had signed an Advance Care Directive and was aware that she would come home to die, but she still didn’t want hospice. On the second day at home she collapsed in the hallway and her husband finally got hospice involved. There were precious few days left, during which she stopped taking her medication, then refused food and drink. Hospice put her on a morphine drip through her port. My sister was an amazing fighter. She never came to the point when she wanted to talk with her kids about her passing. She just couldn’t bring herself to say good-bye. And maybe it wasn’t even necessary.

The children went to school in the mornings as usual. We had notified the teachers. When they came home in the afternoon, they were involved in their mom’s care, making cold wraps around her calves to bring her high fever down, holding her hand by her bed site. It was very important for them to participate. Being around their mom, their own senses made them understand she was rapidly changing – and that they were helping her to get comfortable. Often, children blame themselves and believe “Momy is dying because we played too loud” or similar twisted stories. Kids need to know it is not their fault. They need to be told that mom is not leaving because they were bad or that she doesn’t love them enough to stay.

Grownups can play a very important role helping kids to come to terms with this difficult transition. Especially during these last few days, kids need a lot of attention, physical touch, cuddling as well as playtime and laughter to remind them that life goes on – that there will be continuity, they will be taken care of. This is the time when they instinctively start bonding closely with others who will remain in their lives as care givers.

Kids are generally very curious about death but often to afraid to ask. So I told them a little about the process of dying in general. They were eager to discuss. I found it very important to explain that the spirit of a dying person will leave the body, the house this person has inhabited for so long – because the body no longer works for them. But what we call “dying” means only that you lose your body, not your life. And that we can always talk to the spirits who are with us for the rest of our lives, like guardian angels looking over our shoulders, helping und protecting us. And that whenever our time came, we will be reunited on the other side.

When the kids were tired in the evening, we asked them if they wanted to stay up longer but they wanted to say good-night to their mom and go to sleep. I’m sure if it would have been important for my sister to have the kids around for her transition, she would have held on until the morning. But often it is this peace the dying need the most to fully focus on their transition without worrying how others might be hurt by it.

My sister died this very night. I placed a waterproof sheet below her, washed her gently and anointed her. I closed her eyes, bound her chin up for 2 hours until rigor mortis had settled in to keep her mouth closed. I smudged her with sage smoke, dressed her in clean clothes and laid with her in her bed until the morning. It was my sacred time to be with her and to mourn, knowing that in the morning, my attention would have to be on her children.

When the time came to wake the kids, I laid down in bed with them. I cuddled with them and let them wake up fully before I told them that their mom had turned into a white little bird and flown away. The words came spontaneously to me and I felt they were my sister’s words. The kids knew immediately what had happened. We lay in bed for another half hour, holding each other, crying together, talking. It was important that they saw me cry, as it gave them “permission” to cry, too. Crying can still be more difficult for boys than it is for girls.

Then I asked them if we should go visit Maia together. I walked ahead, while the father walked with the kids behind. I gently touched Maia’s face and caressed her hair, touched her hands. And I told the kids that it was totally fine to come lie down in the bed next to her and touch her. They came closer; first shy, then increasingly curious and bolder. They touched her cooling skin gently. The younger one said he was going to tickle her feet to see if she would react. He did so and I thought it was wonderful for him to have such a curious, fearless experience as he encountered the first human dead body in his life. When we had spent an hour talking, touching her and letting it all settle in, I took the kids to go get fresh rolls for breakfast and flowers. They walked with me and I could tell how it helped them to be outside for half an hour, seeing “normality” continues.

Back home, we decorated my sister’s bed and entire room with beautiful flowers. All the while we talked to her. Then we told her: ”We’re going into the kitchen now to have breakfast, we’ll be right back.” It helped the kids to talk with her. During breakfast, two glasses and one light bulb broke. (The days before, the dish washer, washing machine and computer had all broken down – a common and curious occurrence). After the first broken glass I told the kids that this was their mom trying to get their attention and to show them that she was very much around. The kids picked up on this quickly, every time something else broke, addressing her directly: “Hey Mom, we know you’re here! We love you.”

After breakfast, we did a ceremony together, where I explained the kids and her husband the meaning of chakras as power vortexes through which the body feeds itself with cosmic energy throughout life and which are closing when a spirit is leaving a body behind. We thanked each part of my sister’s body for its’ love and service. The kids got to sound the chimes and smudge the air around her with sage smoke to help her gradual transition from matter to less dense matter.

We spent the entire day in and out of Maia’s bedroom, as friends came visit for a wake, at times we were six people cuddling on the bed with my sister, the kids in the middle of it all. At times they went next door to play video games with their friends or went outside to play soccer – always one of us accompanied them to make sure they were alright. After a short time they always wanted to return to check if their mom was still unmoved, still the same. She was.

In the evening, the father took them to soccer practice and I had the funeral home come pick her up for her cremation. It was important for us that the kids did not have this traumatic image in their mind how their mom was carried out in a coffin.

We explained to them the process of cremation and when we brought home the urn, we opened it and showed them the ashes, explaining that this is very clean dust, nothing scary about it – that their mom was now always everywhere, not attached to these ashes any longer. The ceremony we did with the ashes a day later, pouring them with rose peddles into a local lake, was for our sake, not so much for my sister who was free from these material particles by now. The kids contributed flower peddles as the ashes were poured from a boat into the middle of the large alpine lake. We all gave Maia little gifts which sunk with the ashes into the deep waters. The kids had picked a baby tooth each and important stones and a amulets they had valued. Afterwards we drove the boat half a mile away and swam in the lake, to join my sister and share the beautiful lake.

On the weekend, we had the memorial party with over 200 guests, many wonderful stories about her and a photo slide show. This very evening we all watched the German soccer team win the world cup, a very important event for the soccer-crazy kids. The younger one was sure that it was his mom who had made this win happen, to comfort them for her transition. I’m sure he’s right.

Ziri