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Early: An Intimate History of Premature Birth and What It Teaches Us About Being Human
by Sarah DiGregorio, HarperCollins, 2020
Unless we’ve had a premature baby or work in a Neonatal Intensive Care Unit (NICU), most of us don’t know very much about premature babies. We don’t know that the line of potential viability has dropped to, or been pushed to, around 23 weeks’ gestation. We don’t know that in 1903 (and for the next forty years), people paid to see premature babies in incubators being cared for by professional nurses at places like Coney Island—and that this was some of the best care available. That in the 1960s insurance would pay for the care of premature infants only if they lived fifteen days. That to survive, many premature babies not only need a ventilator but also a thing called surfactant to coat the inside of their lungs. Those who do know about premature babies know that experiences of racism in America lead to more premature births. They also understand that premature babies often need very intentional and special care after they leave the hospital to help them grow and thrive, yet many do not get this care.
Author Sarah DiGregorio didn’t know much about premature babies until she had one of her own. Her daughter survived and is thriving, but the experience was a harrowing one for baby and parents. Inspired by her experiences, DiGregorio set out to understand both the history of premature birth and its current realities. In her writing, she deftly integrates her personal story with historical accounts, current medical debates, and policy descriptions. She bravely illuminates and discusses hard questions related to viability, challenging decision-making, and when minimizing suffering can become the priority in a brief life. This is a significant summary and exploration of a world which impacts thousands of babies, families, and healthcare providers each year in the United States. A readable and much-appreciated resource for both health professionals and families.
Children need to be informed about situations that affect their lives. If children are not informed, they will often make up explanations that makes sense to them but do not fit the situation—"He didn't go pee pee before he went in the water; that's why he drowned" or "It's my fault that my parents got divorced." The challenge is to avoid the temptations of saying too little or saying too much. The loss needs to be explained in simple language without long initial explanations. Darcie Sims, grief counselor and writer, recommends that the adult watch the eyes of the child to see when they indicate that no more information can be taken in and it's time to stop talking. She recommends giving a simple statement of what happened such as "Grandpa died last night" and then watch the child's eyes and be guided by their questions. After giving a child the basic information, the parent can then follow the lead of the child about how much more information is needed at that time.
Children often have questions about what happens to a body at a funeral home, but they don’t always voice those questions and adults are often not sure how to explain. We have provided a “Mr. Rogers”-style video tour of a funeral home to help kids (and adults) understand. Attention Adults: Please preview before sharing with children. Watch video.
In order for children to feel comfortable asking questions and talking about emotional topics, they need permission from adults to bring up these issues. Permission is given with words and actions. A six year old girl began to cry when playing with a video game that belonged to her older brother who had recently died. Her parents comforted her and told her that she could talk about her brother any time. She responded that she didn't think she was supposed to talk about him because they never did.
Part of giving permission is also allowing a child to continue to play and be involved in normal childhood activities. Children need to learn both that it is OK to be upset about a situation and that it is OK to feel good and have fun even though something or someone very special has been lost. Adults need to give permission for both kinds of responses.
A parent is often a child's first teacher about how to handle loss. No matter what is told to a child about how to cope, the old saying continues to hold true, "Actions speak louder than words." If the parent says it's OK to talk about a loss, then the parent will need to bring up the subject from time to time—"I sure do miss Grandma around this time of year—she would already be starting her garden."
A powerful and needed lesson that may only be taught by example is that one can be sad and upset and still be strong. Often the word "strong" is used in a way that suggests that to "be strong" is to not show any emotion. A different and healthier message is that one can be strong by feeling the feelings that are present and still taking care of responsibilities—"I feel really sad, too, and may even cry, but I will still be here to take care of you."
Parents cannot protect a child from all losses, but parents can help children understand what has happened, answer their questions (even when the answer is "I don't know"), offer support and show them healthy ways to cope.
For both adults and children, "why" questions are sometimes the most difficult and this is because often there is not a good answer to a "why" question. Sometimes, however, "why" questions are practical questions that may have practical answers:
"Why did she die, Daddy?"
"Well, her heart stopped working, and when a person's heart stops working, she dies."
"Mom, why did he die?"
"The road was wet and very slick. The car slid off the road and crashed and his head got hurt so badly that he died."
Practical "why" questions, while not easy to answer, can have fairly straightforward answers. The challenge here is to find the simple language needed and the courage to say the words to a questioning and grieving child.
Of course there is another kind of "why" question. The making meaning, spiritual, big picture "why" question. "But why did she die? I didn't want her to." or "Why did he have to die?" These are harder because these are often our questions, too, and these questions usually defy simple answers. One thing that we as caring adults can do is help children avoid accepting "bad" answers to "why" questions. "Bad" answers are ones that are not fair to those involved:
Sometimes children (and adults) want an answer to a "why" question so badly that they accept a "bad" answer. With no explanation or no answer, children can make up an answer to make sense of what happened. The answer they make up, however, is not likely to be true or fair to themselves or others.
A five-year-old boy got angry and kicked the tricycle of his three-year-old brother, and he was a witness to this transgression. Later that day the father accidentally ran over the younger brother's tricycle with the family car which bent the tricycle and made it unfit to ride. The younger brother was not a witness to this event. When the younger brother did see his bent and unusable tricycle, he made sense out of what he saw—it was the older brother's fault. He saw was the older brother kick his tricycle, and the next time he saw it, it was bent and broken. From his experience and three-year-old perspective, it made perfect sense. It was, nevertheless, a "bad" answer to a "why" question.
Many times the best answer to a "why" question is "I don't know." This can be the most honest and accurate answer possible. This answer also helps teach that there are mysteries in life and things that even adults don't know. Sometimes—and it may feel like too much of the time—we just don't know why something happens or why someone dies. Not knowing can be hard, but it is better than being unjustly burdened with the guilt or anger of a "bad" answer to a "why" question.
"A toddler or preschooler really can't understand the death of a parent and kids are resilient, so there's not much we can or need to do for such a child."
Sometimes we hear statements such as this and may be tempted to hold such beliefs ourselves, but our better selves generally know better. Children do not have to understand an event to be affected by it, and there are things that caring adults can do to help a child when an important person for the child has died. A toddler or preschooler may quickly understand that the person is not with them and that the family is different, but there is much more to be understood. Children will need adult help to understand more and find ways to cope with such a loss.
Here are some things to think about when trying to help a grieving toddler or preschooler after an important person to the child has died:
Children will grieve the loss of anyone with whom they have bonded, and they will feel the many feelings of grief on the inside. Children need adult help to guide them in ways to cope with such difficult feelings and to understand—at their age and maturity level—the death of an important person and the changes it brings. When a child experiences a person's death as a toddler or preschooler, the adult caregivers can know that the job of supporting the child and helping the child understand will continue throughout childhood.
An almost universal desire for adults is to protect children from unnecessary pain, upset and struggles. Almost as universal is the desire to protect children from what may be necessary pain, upset and struggles. We want children's lives to be peaceful, predicable and happy and we want them to see us as capable, safe and calm. The younger the child the more likely the child will feel confident and sure that the grownups can fix any problem, answer any question and handle whatever comes our way. As grownups—as relative a term as will come along—we are understandably more realistic about what we can and cannot handle and know that sometimes we can be overwhelmed. Usually, however, we don't want to be overwhelmed in front of the children. We want to keep up the illusion of our invulnerability for as long as possible, riding that horse until it drops.
There are times, however, when grief comes hard to us as adults and we can't really keep up the façade of being above the fray. What do we do then? One option is to pretend that we're still in control and beyond the struggles and emotions of regular mortals. This option has its risks as we are actually not beyond such struggles and emotions and our children can pick up on the signs that it's a lot more difficult than we are letting on.
A different option is to admit to our humanness and tell the children that we are sad and upset because that's the way people feel when sad and upsetting things happen—like when someone dies or someone is hurt badly or very sick. This means that they will sometimes see us be sad and upset. We may cry. We may look sad. We may not be as cheerful or energetic as usual. When we're more honest about the situation and how we feel, we can help children understand what they will be experiencing with us as opposed to the "pay no attention to the man behind the curtain" dissonance of what they hear from us and what they actually see. Along with this honesty is a need for reassurance. Even if we are sad and upset, we will continue to do our jobs as adults and insure that their needs are met—and then we let them see by our actions that this is true. It may not be service with a smile, but it can be honest, dependable and real.
For adults whose religious tradition or spirituality includes a belief in heaven, this conviction is often a source of strength, hope and comfort. The vision of the one who has died in a place of peace and wholeness and the assurance of an eventual reunion with that one has provided immeasurable support to countless grievers. For these people in grief, finding comfort without the hope and belief in heaven can feel unimaginable. The concern for young children—especially preschool age children—is that the concept of heaven can sometimes be unimaginable.
Several years ago we had a death in our family when our daughter was three years old. We did our best to explain that the person who died was dead and so the person would not be around to talk to or play with--when you're dead, you stay dead. This was important as one day she had money in her hand and explained that she was going to give this to the person who died when he stopped dying. Our explanations seemed to make sense to her until Easter came. During Easter, she heard the story of a man who was dead but didn't stay dead. This story didn't make sense to her three year old mind and it struck me just how "big" and abstract concepts such as resurrection and heaven can be.
We recognize that young children are concrete thinkers—just try to explain this statement—"young children are concrete thinkers" to a young child! Abstract thinking does come eventually, gradually and in fits and starts. The idea that someone is dead but also alive is an abstract concept as is the idea of heaven. Where exactly is heaven? If those who have died are there, why can't we visit them or why can't they come back and visit us? For a young child it may be difficult or even not possible to grasp the difference between heaven and another place they have never been—Dallas or Disney World or the North Pole. Even for we adult abstract thinkers, how would we describe where heaven is?
When someone dies, the first concept is to understand is what being dead means. When a person is dead, the person no longer moves, talks, gets hungry, feels heat or cold or needs to go to the bathroom. When dead, the body does not do or function as before—this is often how we know that someone is dead. The second idea is that those of us still alive can feel upset and such feelings are perfectly natural. The third idea is that we can remember the person who died—talk about him or her, look at pictures, tell stories, etc. The basics are that when a person dies the person is dead and stays dead and people still alive can feel upset and remember the person.
For families in which heaven is an important belief and source of comfort, we need to be patient and know that the older the child gets, the more we can emphasize and teach about heaven and the afterlife. Children need to be taught the important spiritual and religious beliefs of their families and lessons need to fit the comprehension level of the child—we don't have to explain everything at once. First comes the understanding of the basics of death and then the understanding of the afterlife. Death, grief, remembering and then heaven. For young children, until heaven is more comfort than confusion, heaven can wait.
Lessons from Lions is a unique user-friendly resource to help children better understand and discuss coping with grief. Lessons from Lions is based on a popular children’s movie and is especially appropriate for school classrooms and children's grief support groups.
Spring Groups will be provided will be provided online in a video-conference format.
Good Mourning Grief Support Groups are for any child or teen, ages Kindergarten through high school, who have experienced the death of a family member or friend. There are also support groups available for the adults in the family. There is no charge for the program, but a completed application is required for each child or teen. For spring 2021, the Parent Orientation and 9-week series will be in March through early May.
Alliance for Grief and Loss will be provided online in a video-conference format.
The Alliance for Grief and Loss is an informal coalition of helping professionals interested in grief and loss issues. Meetings will be by online video conference using computer or smartphone. “Business” will be at 11:30 am and the program will begin at 11:45 am. In-person presentations will end at 1:00 pm and 90-minute webinars will end at 1:30 pm. Online connection information will be sent prior to each meeting.
Spring 2021 schedule is below:
Please email email@example.com for more information or to be added to the email mailing list for the Alliance for Grief and Loss. All are welcome.