Iowa City Hospice has worked hard to create a day dedicated to aid children in dealing with death.
By Kayli Reese
Children play with bubbles in the Coralridge Mall Parking Lot on Sunday as part of PLAYvolution. This particular event is a two-week-long Johnson County movement featuring a series of activities which encourage children and adults to get outside and play.
[K]amp Kaleidoscope kids spent a fun day Jan. 28 making friends and crafts despite the ever-pressing discussion hanging through the air — the subject of death.
Kimberly Peterson of Iowa City Hospice said the one-day camp focuses on helping children understand grief and provides support in the wake of a death of a loved one. Kamp Kaleidoscope was put on by the Iowa City Hospice bereavement counselors and volunteers.
This is the second such Kamp Kaleidoscope event, Peterson said. Iowa City Hospice began this event for children in June 2016, she said.
“At Iowa City Hospice, we’re always evaluating our services,” she said. “We wanted to expand support for children and youth.”
Emily Mozena, a Hospice volunteer and a University of Iowa lecturer in the graduate Child Life Program, said Kamp Kaleidoscope in June was very successful, and more children participated in the January event. She said Iowa City Hospice hopes to have Kamp Kaleidoscope events twice a year.
The camp supports children who have lost someone close to them, she said, be it a grandparent, parent, or sibling.
Peterson said kids can come to the camp more than one time, and any of the children can receive any follow-up support needed.
“[The camp is] a really safe space for kids to talk about death,” Mozena said, noting how difficult it can be for children to speak about such heavy topics in schools. “It’s amazing to listen and see what the kids are willing to share.”
After starting the day by decorating bags and participating in silly icebreakers, Mozena said, the kids began delving into the heavier emotions the camp focuses on. The theme of this event was seasons, she said, and the kids spent time thinking of memories with their deceased loved ones that can be associated with each season. Some of these memories, she said, include building snowmen, playing with water balloons, and jumping in leaves.
A music therapist also participated, Mozena said, creating a song based on the kids’ memories. During the closing ceremony for parents, she said, the kids agreed to perform the song.
A nurse from the Hospice also came to the camp, she said, to answer any questions the kids had about the circumstances surrounding their loved one’s death. She said talking compassionately but plainly with the kids helps to minimize questions and creates less confusion.
“Open communication with the kids and using simpler terms is key,” Mozena said. “Using the ‘D-words’ — death and dying — is very important.”
Kelsey Tebbe, a volunteer for Kamp Kaleidoscope and UI graduate student in Child Life, said she found it amazing how the kids opened up to each other and the volunteers in only a day. In the beginning, she said, the kids were shy, but they quickly were able to talk openly and comfort one another.
Tebbe noted that she found the ability of kids, some who were only 6 years old, to understand their feelings surrounding death, using big words to describe their emotions.
During the day’s events, she said she learned important methods and resources to practice later in her field, citing the experience as extremely eye-opening. By taking time to build each child’s trust, Tebbe said, the kids were able to leave Kamp Kaleidoscope with a better outlook and better understanding of coping.
“With a 6-year-old, you don’t always know what they’re going through by looking at them,” she said. “That’s why it’s so important to talk.”
Watching a friend or loved one go through the heartache of losing a child can be a horribly painful thing to do. If you yourself have experienced such a thing, then the pain is acutely familiar to you; but if you haven’t, you may not have the first clue about what to do or say. Below are six things to you can do to show that you’re there and that you care.
1. Be proactive.
If a friend or a loved one has just lost a child, you may be inclined to reach out and say to them something like, “Please let me know if there’s anything at all I can do to help,” or perhaps, “Don’t hesitate to reach out if you need anything from me.” But how often do people in need readily and comfortably reach out? If you’re sincere in your offer to help, be proactive and offer it outright instead of waiting to be asked. Rather than sitting around and expecting the family to come to you in their time of grief, put a life preserver right within their reach, and place your hand directly in theirs.
2. Feed them.
One of the last things a grieving family wants to think about after the loss of a child is meal-planning, cooking, and cleaning up — especially if they have children in the house who don’t understand the level of grief they’re experiencing. If you have the capacity to make a home-cooked meal, to bring takeout, or even to just provide them with a gift card to their favorite restaurant, then do it at the first opportunity you have. They’ll be so grateful for the thought, for the meal and for the provision you gave them.
3. Hope for the best, but assume the worst.
Maybe you yourself have experienced the loss of a baby, or maybe you haven’t — but an important thing to remember is that grief is not linear, and the course it takes through each grieving parent is deeply personal and unpredictable all the same. Time will pass, and you will find yourself as an outlet of support hopeful that the wound is healing — but do not assume that it has just yet. Triggers abound, and the loss of a baby will be with its mother for the rest of her life; so try your utmost to allow her an abundance of safe space to grieve, no matter how much time has passed or the extent to which you figure she should have moved on by now.
4. Commiserate and empathize.
The last thing a person wants to hear after the loss of their child is that it was for the best, that it was meant to be, or that it all happened this way for a reason. Put yourself in a grieving family’s shoes and remember that platitudes and placations have no place. Instead, do everything you can to empathize, to console and to be a haven where sadness, anger and hopelessness can abound freely and without reservation. Be an outlet for that grieving mother to process everything she’s feeling — whether she chooses to lament outwardly, to curse the ground she walks on, or to retreat deep within herself for an extended period of time. Allow her grief take its course.
5. Show grace.
Don’t be offended if she doesn’t readily interact with you, return your calls or much acknowledge you at all. This isn’t personal, nor is it the time to analyze the health or status of your relationship. People grieve in different ways, and it’s important to show all the grace you can while you watch from the outside as a family processes the loss of their child.
6. Send a text.
If you’re up to your eyeballs at home, if you’re living a thousand miles away, or if you just don’t otherwise have it in you to be on the front lines, do what you can to remind your friend that you’re there, that you love her and that you’re thinking of her. Whether or not she replies right away doesn’t matter; she’ll be endlessly grateful to know that she’s on your mind, because the silence from the people she thought would be there for her can be otherwise deafening.
[E]very year 43,000 children die in the United States.
But, when people talk about death they rarely talk about kids. For many, the death of a child can be too much to even consider talking about. But, kids do get sick and face the end of life.
When your work concerns the children facing the longest odds you do not get to ignore the truth.
“I can’t tell you how many times kids have answered that question of ‘What are you worried about?’ with ‘I’m afraid I’m dying and it scares mom to talk about it,’” says Kris Catrine at Children’s Hospitals and Clinics of Minnesota.
“Anything else a kid wants to talk about they can talk about with their family and have support and this is sort of taboo. So, the scariest thing in their mind they can’t talk about; that’s a lot of weight on a child,” adds Catrine.
Dr. Stefan Friedrichsdorf at Children’s Minnesota and his staff work tirelessly to fight for life, but also realize another conversation has to happen.
“What we are asking is like considering what your daughter is up against, what are you hoping for? And, most of time, we hear ‘I hope for miracle cure.’ And, then you look them in the eye and say ‘I hope this too,’” said Dr. Friedrichsdorf. “Just in case a miracle does not happen, what else are you hoping for?”
They talk about what will make the child happy. Whether that’s just to go outside, go to school again or just to talk about what’s going on.
Kris Catrine and Dr. Friedrichsdorf work in the Palliative Care program at Children’s Minnesota.
[W]hen we lived in Japan, my husband took me on a date to a cemetery. In his defense, it was a famous cemetery in an Ewok-worthy forest on Mount Koya known for gimmicky headstones in the shapes of rockets and coffee cups.
Yet they didn’t interest me as much as the hundreds of stone Jizo statues that lined the wooded paths. These small figurines dressed in red caps and bibs honor the souls of babies who are never born. Crowding their feet are toys and snacks left by parents to comfort their children in the afterlife. Sometimes a woman would turn away as we approached her on the path. Sometimes the flowers would still be fresh.
My husband, Brady, and I were young enough then to assume that tragedies happened to other people and not to us. This was a belief we carried for years until the day we held hands on an ultrasound table watching the technician turn off the monitor and tiptoe out of the room. A miscarriage at 10 weeks produces no body, so there would be no funeral. “What do we even do?” I asked the doctor.
She wrote me a prescription for Percocet: “Go home and sleep.”
We went home. I didn’t sleep. I spent a week throwing myself around the house I’d decorated to look like a dojo — that’s how many souvenirs I brought when we’d moved back to the States from Japan. I was itchy with sadness. I picked at my cuticles and tore out my hair. I had all this sorrow and no one to give it to, and Brady couldn’t take it off me because his hands were already full of his own mourning. We knew miscarriage was common. But why wasn’t there anything people did when it happened?
“If only there were some kind of tradition…” I said to Brady.
“Like a Jizo?” he replied, recalling that quiet day we’d spent walking hand-in-hand through a Japanese forest of other people’s grief.
It was as if someone had poured calamine lotion all over me. “Exactly like a Jizo.”
What can’t one buy on the internet? Our statue of Jizo arrived a few days later. He was the height of a paperback and made of cement. His eyes were squinted in a mellow smile, hands folded in prayer.
According to Buddhist belief, a baby who is never born can’t go to heaven, having never had the opportunity to accumulate good karma. But Jizo, a sort of patron saint of fetal demise, can smuggle these half-baked souls to paradise in his pockets. He also delivers the toys and snacks we saw being left at his feet on Mount Koya. Jizo is the U.P.S. guy of the afterlife.
Brady and I grieved the baby in ways that were different but equally sad. One thing we both understood perfectly, though, was Jizo — why we had to search for the right kind of red yarn, how I had to crochet the smallest hat and coat three times to get it right. It was nice for us to have something to do, a project to finish in lieu of the baby I failed to complete. When Jizo was dressed, Brady complimented my handiwork. “Where should we put him? In the yard?”
“Maybe in a few days,” I balked, stationing the statue on our dining room table where I could pat him on the head on my way to the kitchen. I talked to him. Sometimes I kissed him when no one was looking, or I took him with me to the living room to watch TV.
It was crazy to fuss over a statue like I did. But I felt crazy, which could have been from the pregnancy hormones still coursing rudely through my body. Or maybe it was the lack of traditions surrounding miscarriage in the States that gave me nothing to take the edge off my grief. Without a prescribed course for mourning, I didn’t know what else to do besides mother this lump of concrete as if he could actually transfer my love to the afterlife.
After a few days of keeping Jizo in the house, I got to the point where I could put him on the front porch without too much separation anxiety. A few weeks later, Brady planted a garden for him in the backyard, where Jizo now sits and reminds us of the baby we lost — not so often as to make us sad, but often enough so that we don’t forget him entirely.
I check on Jizo when I take out the trash, picking him up when he gets knocked over by squirrels or brushing snow off his hat. I catch Brady through the window plucking leaves from his little red coat. On the anniversary of the miscarriage, I replaced the statue’s sun-bleached clothes with fresh ones, gave him a bath, kissed him on the head and put him back outside.
I’m not sure if this is the correct way to weather a miscarriage, or even the right way to Jizo. I don’t know how long I’m supposed to crochet new outfits: maybe until I don’t feel the need to, or maybe forever.
I do know that like those parents haunting Mount Koya, Brady and I will always think of that baby who never was. We’ll leave pieces of our love for him wherever we go, hoping Jizo will deliver them to wherever he is.
[F]or a couple of hours on Dec. 10, the Phelps family felt like Christmas came a little bit early at their home in Henderson, Kentucky.
Their two Labrador Retrievers, Lil and Pixie, had given birth to two healthy litters, with Lil having her puppies just about a week shy of Pixie. When Amanda Phelps discovered Pixie had given birth, she called her family with the news and they hurried over.
But in the time it took Amanda to run back into her house to shower and come back outside, Pixie’s puppies had disappeared. It was later discovered that the Phelps’ other dog had attacked and killed Pixie’s litter.
“I was devastated,” Amanda said. “But the worst part about it was seeing Pixie so devastated. She was crying and searching everywhere for her puppies and they were gone. ”
Amanda and the rest of her family did their best to care for the remaining litter, but also try and comfort the now grieving dog that couldn’t stop walking around their property, frantically searching for her puppies. She knew in time Pixie would heal and so would the rest of the family. But on that cold Saturday afternoon, Amanda wondered how a day that started with joy could end with so much sadness.
“It was something that didn’t make any sense,” Amanda said. “But I told myself, ‘Things happen, and things happen for a reason.’ I just didn’t know what that reason was.”
Over the next 24 hours, Amanda faced her fair share of grief and tears as she cared for Pixie and the other little newborn puppies. But the Phelpses, along with another unsuspecting family, received the miracle they didn’t know they needed thanks to the help of a stranger.
Similar circumstances, different families
Little did Amanda know, over 400 miles away in a small town in northeast Ohio, another family was grieving a similar loss on the same day.
Katie and Dan Weese, along with their three sons, of North Ridgeville, Ohio were celebrating the arrival of a new litter of English Bulldog puppies from their 3-year-old bulldog, Indy. The family took Indy to their local veterinarian’s office to have the puppies delivered by C-section. Their 6-year-old son, Dylan, shot video of the birth.
“Indy was his best friend,” Katie said. “They went everywhere together. He was counting down the days until she had her puppies.”
Indy appeared to be recovering smoothly following the surgery, and was given the all-clear to go home to care for seven new puppies.
But not long after the Weeses gathered Indy’s puppies and helped them start nursing, they realized Indy had stopped breathing.
Dan started CPR, and Katie put their children in the car to rush back over to the veterinarian’s office. Dan realized before they got to their destination that Indy was dead.
“It was just so unreal,” Katie said. “It was instantaneous. One minute we were celebrating these healthy pups, the next we’re getting ready to bury our family dog.”
But the family didn’t have much time to grieve, now that they had seven hungry puppies who were motherless. Katie drove to the local pet store to buy feeding supplies while Dan stayed home to help their three sons make sense of what had just happened.
“Later that day, Dylan doubled over with what looked like a stomach ache,” Katie said. “I asked him what was wrong, all he could say was ‘I’m just so sad.’ And that was when we realized we needed to all cry and let what happened sink in. It was therapeutic. But then we knew we had to get work, because we had our work cut out for us.”
The Weese family worked around the clock to feed the puppies, but they knew this was only the beginning of a long journey. After one round of feeding was done, they had to start preparing for the next.
Later that night, Dan posted something on their Facebook page — Red, White and Bulldogs — detailing what had happened to Indy that day. Red, White and Bulldogs also has its own blog and has a large following.
“I needed to talk about what happened,” Dan said. “I needed to write about it. Writing and talking to people is what helps me grieve the most, and I wasn’t doing it to try and draw attention to the situation, but mainly to help me process the day.”
‘It felt like fate’
Meanwhile, in Horse Cave, Kentucky, Macy Grubbs was casually scrolling through his Facebook feed, seeing what his friends and family were up to. Grubbs breeds Labrador Retrievers, and the Phelpses used one of his Labradors as the sire for both Pixie and Lil — so the Phelps family was on his mind that day, knowing that Pixie had lost all of her puppies.
Grubbs, who also grew up with English Bulldogs, follows several different breeders on his feed, including Dan and Katie Weese. He stumbled across the post Dan had made about losing Indy.
He read the post about the now orphaned bulldog puppies in Ohio and asked himself, “What if?”
“I couldn’t believe it happened on the same day, it felt like fate that I had seen it,” Grubbs said. “I knew there was a grieving dog in Henderson, and these seven motherless puppies in Ohio, and if we timed it right, we could make it work.”
Grubbs thought it over, and then sent a message to Dan.
“Hey guys I am terribly sorry to hear of your loss. I want to throw an idea your way, it may or may not help. I have a lab that gave birth yesterday and she lost her pups. She is grieving and producing milk like crazy. If you’re interested it might be worth a try. If we can help let us know,” Grubbs wrote.
Both Dan and Katie read the message and were conflicted. It sounded too good to be true, but if it worked, it could be the answer both families needed this holiday season.
“I thought, ‘This is just too crazy.’ I said to Dan, ‘This family wants to give us their dog to feed our puppies. That’s kind of weird, isnt it? And I saw they were from Kentucky, and I thought that was weird too. Why would some strangers want to come to Ohio and help us?”
From Kentucky to Ohio
Dan decided to take a leap of faith and call Grubbs. After all, what else did he have to lose?
“I remember Macy answered the phone, and I immediately calmed down after hearing his gentle, Kentucky accent,” Macy laughed. “Right off the bat, he called me brother and I knew this was a man who wanted to do something out of the kindness of his heart.”
The two men made arrangements for the families to meet the next day. Grubbs and Amanda, with Pixie in tow, made the almost seven-hour drive to Ohio to see if Pixie could help the orphaned bulldogs.
After their introductions, what happened next was what all three parties described as nothing short of a Christmas miracle.
“Pixie just laid right down and started licking and cleaning those puppies like they were her own,” Amanda said. “She knew exactly what to do.”
Katie and Dan said they had no way to predict if the plan would work. Dogs can sometimes reject their own puppies, let alone adopt a litter outside of their own, Katie said.
“I think we were all just hoping and praying that this would work,” Dan said. “We had nothing to lose but everything to gain at that point.”
And gain they did. Amanda and Grubbs left Pixie with the Weese family, where she will stay for the next four to five weeks as the puppies continue to nurse and be nurtured by Pixie.
Unexpected blessings
Pixie has settled in just fine, Katie said, and has gained some new friends of her own.
“Our boys adore her,” Katie said. “They’ll take her outside and run with her through the woods. It’s going to be hard to say goodbye when she goes back to Kentucky, but I’m predicting because of this, we’ll be getting a big dog of our own in the future.”
Amanda and the rest of her family miss Pixie, she said, and are counting down the days until she makes her trip back home to Henderson. But she knows that Pixie getting her puppies back was the best, and most unexpected, miracle she could have asked for.
“We were two families mourning in the same way, but we found a way to find some hope through what happened,” Amanda said.
Grubbs said his reasoning for reaching out to the Weese family was pure instinct, and hoped that reaching out would bring comfort to not only Pixie, but the families, too.
“One of the first things Macy said to us was what he believed, which was the part of scripture that says ‘Love thy neighbor.’ And that’s what he did, he showed us love in a way we can’t repay,’” Dan said.
The Weese family got another unexpected blessing from this journey, too. Their son Dylan was adopted, and Pixie’s adoption of their seven bulldog puppies has hit closer to home then they thought.
Dylan Weese, 6, plays with Pixie.
“People keep telling us this is such a great story, but the link connecting Dylan with this story has been one of the greatest blessings out of this,” Katie said. “He keeps asking us if we can adopt Pixie, because we adopted him. And even though he knows now that it doesn’t exactly work that way, I think he understands what a blessing adoption is, because he saw Pixie do it with these puppies.”
All three families agreed that they are looking forward to the exact same thing in the next couple of weeks.
“I really just can’t wait to see this yellow lab running around, with seven chubby bulldog puppies running after her,” Katie laughed. “I think that will bring a smile to anyone who sees it.”
Care for dying children must take full account of the emotional and practical needs of their family as well as the young person, according to new guidance from the National Institute for Health and Care Excellence.
The challenges of improving productivity and quality, while also saving money, will prompt massive change in the hospital sector
The guideline, published today, also recommended an “advance care plan” detailing treatment decisions that should be routinely updated and that should include information about whether the child wants to donate their organs.
Children approaching the end of their life, as well as families and carers, may find it distressing to discuss the plan, noted the guidance. It added that they might, therefore, be reluctant to speak about it and may also have differences of opinion over what decisions are recorded in it.
Parent and carers must also be talked to about the support they can expect when the child dies as part of developing the plan, stated the document.
The guideline makes recommendations about how to discuss treatment withdrawal, and what can be done to help families when a child is approaching the end of life, such as preparing for important rituals, having photographs and any considerations around the use of social media.
It also covers how to discuss the preferred place of death for the child, how to manage pain in children, possible seizures, respiratory distress and nutrition.
A specialist paediatric palliative care team should be involved in managing distressing symptoms and must include, at a minimum, a paediatric palliative care consultant, a nurse with expertise in paediatric palliative care, a pharmacist with the same level of expertise, and also professionals who have experience in supporting families and children with practical and social elements of their care.
In addition, information on how to recognise whether a child is in the last few days of their life, about rapid transfer arrangements to their preferred place of death and how to provide care at home is discussed in the guidane.
However, it called for more research about how to identity when a child with a life-limiting condition is likely to die within hours or days.
“To help predict when a child or young person is in the last hours or days of life, a clearer understanding is needed of which groups of signs and symptoms indicate this most clearly, it said.
“This would improve healthcare planning, but importantly would also allow families to realistically address their ‘hopes and wishes’ for their child’s care while preparing themselves for the child’s or young person’s last hours and days of life,” it added.
The guidance also stated that clear, easy to explain information tailored to the child’s age and level of understanding should be provided to them. This could include using art, digital media or music to explore their feelings and questions.
Dr David Vickers, consultant paediatrician at Cambridgeshire Community Services NHS Trust and chair of the NICE guideline committee said: “Providing care for a dying child can be an enormous challenge. It can place a substantial strain on the family.
“Mothers and fathers can be forced into a medical role in order to provide the care their son or daughter needs. It is important for us to recognise this and offer help to alleviate the pressure,” he said.
“By getting this right, and being there for whoever needs us, wherever they need us, we can ensure siblings continue to be a brother or sister, and parents can have time to simply be mum and dad,” he added.
Children and young people with life-limiting illnesses should be asked if they have a wishlist of achievements they want to accomplish, health officials have said.
Medics or care workers developing care plans for youngsters should ask about their “life ambitions and wishes”, according to new guidance on end-of-life care for children and young people from the National Institute for Health and Care Excellence (Nice).
It may be appropriate to ask youngsters what they want to do with social media accounts, such as Facebook or Twitter pages, before they die, experts said
Terminally ill children may wish to close down their social media accounts or keep them as memorial pages
Young people or their families should be asked about what they hope to achieve in life, including ambitions for social activities, relationships and educational attainment, the guideline suggests.
Dying teenagers might want to complete their GCSEs or make specific wishes on who should be given their personal belongings , according to Dr Emily Harrop, who helped to develop the guideline.
The child or a parent, depending on the child’s age, should also be asked about life ambitions, she said.
The paediatric palliative care consultant said: “When we start a conversation about end-of-life planning, rather than introduce that with a very closed question or a very negative question, we often start by asking for things like ‘What do you hope for? What do you aspire to do for yourself? What would you hope your child to achieve?’
“It is incredible what you get back actually. It’s rarely as simple as you’d think.
“It is always very, very individual.
“Some people I counsel are still pregnant but have a baby who has a condition which is life-limiting. One way to deal with the horror of that is to say to the couple ‘what do you and your family still hope for?’. It opens up a conversation where you can look to help them achieve what they hope for and look to be able to talk about, or even dispel, that which they fear.
“For the adolescents I care for, a lot of it is about their legacy, what they leave behind.
“It’s about what they wish to achieve with the time they have – do they want to do their GCSEs? If they have treasured possessions, are they desperate to know who they are going to leave those to?
“On one level, it opens a conversation you need to have and on the next level, it promotes you to think about them as an individual, not just as a person whose medical or social care you are delivering.”
Meanwhile, terminally ill teenagers may want to be asked if they would like social media accounts to be closed down or turned into memorial pages.
The new guidance states that when a child or young person is approaching the end of their life, health or care workers should talk to parents about “what would help them”, such as plans for social media content.
Dr Harrop, who works for Helen & Douglas House Hospices in Oxfordshire, said: “Some young people are old enough to have their own social media pages and when someone passes away, there is a mechanism to make ‘in mem’ (memorial) pages where people can add tributes but the content is limited.
“It was brought up as something that might come into a conversation with parents, or conversations parents have with a young person, to say ‘do you have a specific wish of what we do with your Facebook page or Whatsapp? Do you want us to leave something about you on the net because your friends might find that very meaningful or would you like us to take it all down because it is private to you?'”
The new guidance, which aims to improve the end-of-life care for babies, children and young people, suggests that h ospital, hospice and home care staff must look after the whole family, practically and emotionally, when a child is dying.
It is estimated that more than 40,000 children and young people in England are living with a life-limiting condition – where there is no hope of cure.
Professor Mark Baker, director for the centre of guidelines at Nice, said: “To lose a child is a tragic, life-changing event. But the care given to a child and their family during this difficult time can offer great comfort, if done properly.
“This guidance clearly sets out best practice for all those involved in palliative care, whether that be at home, in a hospice or in a hospital. I hope it will be implemented fully so that those families going through the worst time of their lives are properly supported.”
