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Helping A Child To Die, Part 2

By Leah Carey
Feb. 28, 2017

EDITOR’S NOTE: In the previous edition of Living With Dying, Nancy and Bill Hartwell of Lyndon spoke about the sense of unreality that goes with losing a child to a terminal illness. This week we delve deeper with them, looking into the effects Zachary’s illness on the rest of the family and community.

Zachary was 15 when he was first diagnosed with cancer. Over the following six years, he spent a significant amount of time in and out of hospitals, treatments, and trials. It was an intensive experience for the whole family, including Zach’s younger brother Tyler.

Financial stress

Even with fantastic insurance, which the Hartwells say they have, it is extremely expensive to have a sick child.

“It still drained all of our finances … We cashed in all of our retirements and everything,” Nancy said. “When you can’t work, you still have to pay your bills.”

Because facilities catering to pediatric illnesses tend to be highly specialized, families travel frequently for appointments and treatments. If a child is entered in medical trials, those travels can be even more far-flung. The Hartwells, for instance, spent most of the summer of 2015 traveling back and forth to Kentucky with Zach for an immunotherapy trial.

“He would be there for five weeks and home for one,” Nancy said.

“When you travel, the insurance doesn’t pay for your travel. They don’t pay for your hotel room. They don’t pay your meals, which are much more expensive when you’re eating out.”

They often ate at the hospital, which is cheaper than a restaurant, but still more expensive than eating at home.

“And all the bills still had to be paid.”

During those trips they stayed at the Ronald McDonald House for $10 a night.

“Thank goodness for that … Some of the families that we saw along the way, I don’t know what they would have done without that. They would have been sleeping in the lobby at the hospital,” Nancy said. “I always tell people: When you go through the McDonald’s drive-thru, leave the change. It does make a difference.”

The community stepped up to support the family in ways that they didn’t expect. “It seemed like every time I didn’t know where the next dollar was going to come from, something happened,” Nancy said.

But as proud, independent people, it wasn’t easy for the Hartwells to accept love in the form of money.

“It was very difficult. My sister sat me down one day and she said, ‘Listen. People have to do something for themselves. They feel like they’ve got to do something and there’s nothing else they can do but give you a few dollars. Don’t take that away from them,’” Nancy recounted. “So we began to try to change that attitude. It never became really what I would call comfortable, but we handled it with more grace than we had.”

Even with all that help, the Hartwells’ financial future looks very different now than it did 10 years ago.

“We’ll just work forever,” Nancy said with a rueful laugh. “We’ve resigned ourselves to that. We’re just not going to be able to get done working.”

But both Nancy and Bill insist that they are happy with the choices they made and wouldn’t change anything.

“You do what you’ve got to do. There’s no regrets. It just is what it is for us. We won’t be retiring.”

Healthy sibling of a sick kid

Nancy and Bill had two “litters” of kids, as they call them. There’s an older group of three siblings who already have their own families. Zach was the first of the younger “litter” of two kids. His brother Tyler was 12 when Zach’s cancer was diagnosed.

The Hartwells had already witnessed the health crisis of a nephew, so they knew the perils of taking care of one sick child and one healthy child.

“They told me that they wished they had included [the healthy son] more in what was going on during the whole thing,” Nancy recounted. “He ended up staying home with relatives – losing his parents, losing his brother, everyone gone out of his life. They regretted that they didn’t find a way to include him more.”

Nancy and Bill arranged their lives so that Tyler was part of Zach’s journey. During the many times that Zach had extended stays in Boston hospitals, Bill and Tyler would be home for three days a week and in Boston for four days a week. Both Bill’s work and Tyler’s school were supportive in making this possible.

“We made sure that Tyler was there for everything. When we traveled, Tyler traveled,” Nancy said. “There were a lot of things that Tyler gave up during those years. And there are some things he has some resentment for that he missed out on. But it was very important to us that if family struggles, family struggles together.”

Zach’s passing has been difficult for Tyler.

“He and his brother were best friends,” Nancy said. “Where the older kids all have their own families, Tyler has less … He’s had a hard time dealing with it.”

Keeping life normal

From the very beginning, Zach was insistent on living as normal a life as possible.

“It was very important to Zach that cancer not define him,” Nancy said.

“He didn’t complain, he never got upset,” said Bill. “Well, I can’t say he never got upset. But not often … People would say things like, ‘You’re a hero.’ And he was like, ‘No, I’m not. I’m a person who got sick and I’m recovering and I’m no different than anybody else would be in that given situation.’ That’s how he looked at it.”

Nancy and Bill made sure that their house was welcoming for teenagers so that Zach’s friends would continue to visit. They got lots of video games and kept the kitchen stocked with junk food and soda.

“We made it as pleasant as possible for all of them to be here so they wanted to spend time with him,” Nancy said. “I didn’t want Zach’s friends to feel uncomfortable around him with everything that was going on so … as soon as they walked through the door I would say, ‘Okay, here’s his trach. This is his port. He’s got a feeding tube right here. This is his wheelchair.’”

Piece by piece, she showed and explained everything so Zach’s friends weren’t scared by the unknown. “His friends would tool around in the wheelchair,” she said.

The wheelchair still holds a prominent place in the Hartwells’ home.

 

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Rev. Skye Murray is a board certified chaplain at Dartmouth Hitchcock Memorial Center in Lebanon, New Hampshire. As part of the CHaD (Children’s Hospital at Dartmouth-Hitchcock) team, she has seen many families go through the process of losing a beloved child.

“When we talk about a child that’s dying, what is dying is not just the person you love more than anyone else in the world, it’s also the future life that you’ve imagined with that child,” Murray said. “Children are never in isolation, so it’s a disruption of an entire system. That has lots of bearing on the other siblings in the family, the extended family, and whole communities.”

In addition, she said, if the child is school age, entire school and extracurricular communities will feel the ripples of loss.

And at the center of it, once again, are the parents.

“Fundamental to who parents are is this fierce protection of their child. We are to love and care and protect them so they can be adults. What happens when we can’t do that because of disease and illness? It’s a complete disruption and disorientation to a way of life to see a child die,” Murray said.

How it affects the sibling

Just because a child is physically healthy doesn’t mean they are emotionally unscathed by their sibling’s illness and death.

“I think for many there’s this idea sometimes of guilt: I’m the one who lived,” Murray said. “I think it’s hard for them also to say that they have needs in the midst of a child who is so seriously ill. Those needs can always be trumped by their sibling’s illness or dying process.”

How it affects a marriage

“There is an extremely difficult dynamic of tending to loving relationships in the midst of trying to say goodbye,” Murray said. “There’s a lot of families that come to the hospital very connected and intact and go through this experience that way. But it’s not uncommon that there are difficulties coming together as we each grieve so differently. I’ve definitely seen marriages strengthened through these difficult experiences, and I’ve seen marriages where they go in different directions because the strain is so great.”

[Editor’s note: Read this week’s online extra for how the Hartwells dealt with marital stress during Zach’s illness.]

Murray said that it’s helpful for each parent to have their own support network so that they have someone who isn’t in the thick of things to fall apart with.

“I can’t tell you the number of parents who say, ‘It’s supposed to be me, not them. I’ve lived my life, they’re just starting.’”

Naming their needs

One of the hardest things for many couples is figuring out how to ask for what they need in the midst of an acute or on-going crisis.

“How do you get to a place where you can really start asking for what you need and identifying what you need – meals, taking care of the house, somebody who is saying, ‘I’ll come to the hospital and take you out to lunch because you still need time with your best girlfriend.’ Being able to name those personal needs is very individual,” Murray said.

She sees one of her roles as a chaplain to “help families start to name their needs as they go through the absolute unimaginable, and connect them with some resources.”

Moving forward

Murray said that parents can move forward from the loss of a child, but it’s a long process.

“People talk about time healing wounds,” she said. “I’ve never talked to a parent who is bereaved who isn’t still thinking about their child every day. That doesn’t mean they don’t go on to find meaningful life, but I think they need a lot of support to go on with life without their child in it.”

While people tend to gather around the family during the first days and weeks after a child’s death, the family continues to need support on a longer-term basis.

“Often it’s in the first couple days or weeks after a child dies that people rally. What I hear from people is that they need the love and support to continue,” Murray said.

She said that one thing that can help a family move forward is to create a memory book or memory box to honor the child.

“I talk a lot about legacy building. It continues to tell the story of the child and continues the family having this connection with their child,” Murray said. “The legacy of these children is that love never dies.”

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