Does the below ever describe any of you? If so, like I say: take care of yourselves. Taking care of a child with Moebius can be hard. Of course, all of you would do anything for your Moebius child, and you do it every day. But it can be hard. Be sure and take care of yourselves, too--the below describes why:
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A child’s serious illness can cast a very long shadow across a family, often for years after the crisis has passed.
A mother sat in our clinic recently, crying because her older child
was having trouble in school. She blamed herself. A couple of years ago,
her younger child had been very sick, and she felt she had been so
consumed with worry — at the time and ever since — that she made
mistakes parenting the older child. Behavioral and academic problems
were the result, she insisted, and she would not be dissuaded.
I wondered whether she was distraught at least partly because the
hospitalization of her youngest still frightened her — even though the
child, now fully healthy, was running around the room. Or maybe — I only
thought about this later — she was crying because any medical setting,
with doctors and nurses and medical sights and smells, brought back
intense emotions.
Parents can be haunted by a child’s illness or injury. At the time,
they are faced with the terrifying truth that a child is in danger or in
pain. When the normal stress responses of the parents play out in
extreme cases — and when they continue well beyond the child’s illness —
additional harm can come to the family. The emotional trauma of the
experience, the parental equivalent of coming through the wars, can echo
for years.
Researchers who study parental stress tend to reach for the
oxygen-mask metaphor: if you don’t breathe yourself, you aren’t going to
be able to take care of your child.
“Parents need to feel well enough that they can then be there for their child, their other children,” said Nancy Kassam-Adams, a psychologist who is the director of the Center for Pediatric Traumatic Stress at Children’s Hospital of Philadelphia. “The hardest thing is self-care.”
Dr. Kassam-Adams is the lead author of a new review of post-traumatic
stress in both children and parents after the children were injured,
which concludes that about one in every six children, and a similar percentage of parents, experience significant, persistent symptoms.
They may have intrusive and distressing memories and dreams, or
continue to avoid people or places that evoke the circumstances of the
injury, or struggle with mood problems, including depression. If
untreated, this can damage the child’s emotional and physical recovery.
Research into the effects of parental stress developed as pediatric cancer treatment claimed more and more success stories,
medical victories that gave children their lives back. Clinicians and
social workers — and parents themselves — began asking questions about
how to help families continue on with those triumphantly recovered childhoods.
It helped, in part, to tell parents that they’d been enlisted in a war, said Anne E. Kazak,
a pediatric psychologist and co-director of the Center for Healthcare
Delivery Science at Nemours Pediatric Health System in Wilmington, Del.
Parents connected to this metaphor: “You’ve been part of the war on cancer, the battle fighting it,” she said.
Some of the strategies and insights gained from this body of research
are already visible in most children’s hospitals: a place for parents
to sleep, even in the intensive care unit; including parents in
so-called family-centered rounds; a staff attuned to interpret a
parent’s extreme behavior as a cry for help, rather than a source of
irritation and extra work.
But what happens after children are out of the medical danger zone?
Many parents continue to experience the physical symptoms of stress —
the racing pulse, the dry mouth. They continue to flash back to the
moment of the cancer diagnosis, the moment of the very premature birth,
the moment of the accident.
“It’s my belief a parent who’s traumatized is always expecting the
other shoe to drop, will always be scanning the horizon,” said Dr. Richard J. Shaw, a professor of psychiatry at Stanford.
In an article published this month in the journal Pediatrics, Dr.
Shaw and his colleagues showed that a simple preventive intervention
could significantly reduce the levels of traumatic stress and depression experienced by parents with premature babies
in intensive care. These parents — watching their improbably tiny
babies struggle in one of the most high-tech and unsettling settings in
medicine — are known to be at high risk for severe stress symptoms, including flashbacks and nightmares, anxiety and avoidance.
“The hope for our study was that if we could reduce parental trauma
and anxiety, it might help parents as their kids got older,” Dr. Shaw
said.
He and his colleagues used many techniques from cognitive behavioral
therapy. Parents learned about the ways that stress commonly manifests,
and about techniques to cope, like muscle relaxation. They also learned
ways to understand and describe what was happening to them.
“Cognitive restructuring techniques help people reinterpret and pay
attention to the positive and not catastrophize, developing a trauma
narrative of their experience,” Dr. Shaw said.
One message for doctors is to go on asking about the past illness and
possible related symptoms, and to make sure that families who are
struggling get referred to mental health services where people have experience with traumatic stress.
“As parents, we want our kids to be safe,” Dr. Kassam-Adams said.
“Once you’ve been through this, you know they will never be 100 percent
safe, and it’s hard to stop thinking about it.”
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