http://www.nytimes.com/2001/06/26/health/26VOIC.html
June 26, 2001
Coping With a
Child's Chronic Illness
By RANDI HUTTER EPSTEIN
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"All of these children need a lot of extra work, and typically the
mothers get the brunt of it, and sometimes they resent it," said Dr.
Dennis C. Harper, professor of pediatrics and rehabilitation at the University
of Iowa College of Medicine. Dr. Harper has been studying the impact of
chronically ill children on families for 30 years.
"It's common to feel angry and then guilty for feeling that way,"
he said. "I think one of the biggest issues is the ambivalence around the
future and not being able to predict very well."
Below, five women share their stories, discussing the impact of the illness
on their own emotional well-being, on their marriages and on their other
children.
•
ANDREA CERRA of Pawling, N.Y., is the mother of Joe, 18, and Kathy
and Stephani, 15-year-old identical twins. Stephani suffered from severe
epilepsy, as many as 80 seizures a day.
IT'S very hard when you have a sick child. It drains the family emotionally
and financially. You are at the hospital all day with one kid and then you come
home to two more children who need attention.
Stephani and Kathy were born healthy, then in the first grade Stephani had
her first seizure. She did not have another one until the second grade. All of
a sudden she started staring forward and she bent forward and started
scratching her arm repeatedly. When the neurologist said she had epilepsy and
needed medication, my first reaction was, no way. I was in a state of denial.
But then she was having seizures every day. All of a sudden you're not just a
parent but you have to learn about the brain and neurology. It becomes really
overwhelming. I was working part time as an exporter and eventually I had to
leave because Stephani got too sick.
I had just gotten to the point where the girls were in school and I could
work and I was just feeling so independent again, and then everything was
yanked from me.
I think Kathy felt compelled to take care of her sister and watch out for her.
It was a strain on our marriage, but we were smart enough to realize that we
had to stick together and go forward. We didn't go without fighting, but we
said to each other that we are going to make it.
You feel like a machine; you just keep going. I don't think I slept well for
five years. I just kept pushing.
When Stephani was 9 years old, she started having 80 seizures a day. We
tried every medication and every combination of herbs. We tried the ketogenic
diet (high fat, no carbohydrates, low protein), a last resort for severe
epilepsy.
When Stephani was 11, she was on all these medications that change your
facial features. She wasn't growing at the same rate as her sister. Her face
was puffier. She had increased hair growth and dysplasia on the gums of her
mouth. She would look in the mirror and look at her sister and see this
beautiful face and hair.
She used to cry and say, "Why me?" She would say, "I'm the
ugly one."
We were taking Stephani to Johns Hopkins Medical Center in Baltimore and
were told that Stephani was such a difficult case she would need neurosurgery.
My husband and I were very hesitant.
But then Stephani kept getting sicker. She was on such high levels of
Dilantin [an anti- convulsant] that she could just about function. She couldn't
go to school and had to be home-tutored. Then she started having migraines in
between the seizures. She was dying before our eyes. Kathy was a nervous wreck.
We got to a point where we didn't have a choice.
There were three operations, two to locate the area of seizures and then a
lobectomy. Stephani was 12 at the time. Stephani was a real trouper. I was a
nervous wreck for at least six months afterwards, just waiting for something to
happen.
Both of my girls are profoundly dyslexic, but Kathy has been able to grab on
because she didn't have other problems. This year, we sent Stephani away to
board at a special school. It was a hard decision to separate the girls.
It might sound silly, but the worst part was after it was all over. You sit
and wait for that call that she's having another seizure. Do we live in
constant fear? Yes. Do I blame myself? Yes. Do we keep going? Yes.
•
JAYNE MONDELLO of Eugene, Ore., is the mother of
12-year-old Daniel Doughtery and 10-year-old Sarah Jayne Doughtery, who has no hearing
in her left ear and severe hearing loss in her right ear.
WHEN Sarah was 10 months old, we noticed her physical body was very loose.
She couldn't hold up her head to nurse. I think I was in denial after the first
evaluation. But then I started seeing real signs and I finally got her tested
and she was diagnosed with profound to severe hearing loss.
Sarah has no hearing in her left ear and severe loss in her right ear. She
wears a hearing aid.
At first it was a shock. It certainly put a stress on our marriage. I've
been divorced five years. I think my ex-husband had a hard time dealing with
it, and he started to pull away from the family. He started to learn sign
language but stopped. Sarah was very frustrating. She had lots of temper
tantrums because she couldn't communicate. I started feeling very isolated. I'm
realizing that he did the best he could and now he is involved with the kids. I
started learning sign language right away and teaching her, but it took years
before we got to a point where we are now. Daniel learned sign language, but I
think it's hard on him because of the attention Sarah gets. I'm expecting a lot
of patience from a young child.
What has really helped me is that she is in a wonderful school with a lot of
support in the community. I've been working part time as a nurse's assistant.
We have limited funds, but I think it's important for me to be available to the
kids.
June 26, 2001
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I've also gotten involved in the deaf community. It was real scary in the beginning
for me. I was afraid. It was like facing my fears to see what my daughter's
life would become. But now I'm glad I did it. It helped me break through my own
fears. I've met well-adjusted people who are successful.
It still saddens me that my daughter will always have to struggle. She'll
have to find her own way as she grows up. But I accept who she is, and she
knows both worlds. We're trying to take it one step at a time as she goes
through life. You have to learn to accept your child as a deaf person and then
make life better for them. You can't fix it and turn them into a hearing
person. That's something I've had to learn as I go along.
•
JULIE GORDON of Green Bay, Wis., is the mother of
three girls. Katie and Abigail are 23-year-old fraternal twins. Jessica, 27, is
unable to talk or walk and functions on the level of a preschooler.
JESSICA was born in shock from severe loss of blood during birth. She had to
be resuscitated. She was diagnosed with spastic quadriparesis [stiff, yet
extremely weak muscles in all four limbs]. She cannot walk or talk and has to
be fed by a tube. She can spell and communicate on a second- grade level by
pointing on a communication board.
I went through a stage when I was pretty mad at God. I was literally
suicidal for two to three years, planning on how I could take Jessica with me
to protect her from the world. Other mothers in my support groups have admitted
they've had these thoughts. But we all get pretty adept at putting on a coping
facade to doctors and to our friends.
You lose any quality time as a couple. The only break I ever got from Jessie
was when my mother would take her and I knew she would be screaming and crying
the whole time.
Before Jessie was born I was a first-grade teacher. I never went back to
work after Jessie was born. That was another stress in my marriage, going from
two incomes to one. Plus, children like Jessie are really difficult to manage.
She would have bouts of one to two hours of nonstop screaming. The doctors said
it was due to the neurological damage and the reflux — she was throwing up all
the time.
When Jessie was 4, I gave birth to twins and I was so ecstatically happy to
have two normal babies that I devoted every second of my time to them.
When the twins were about 5 years old, my husband and I separated.
I think to survive you take one day at a time. Otherwise it becomes too
overwhelming. I think you just get more used to it. You get more accepting. You
take more joy in your child's accomplishments. You stop comparing to other
people's children. You start appreciating their uniqueness and their special
qualities and then you see how it has made you a better person. I think the
parents suffer more than the child in the long run.
I think for men it's very difficult. Men are raised to fix things and to
make everything better. It's emasculating and frustrating for them to watch
their wife and child in pain and they can't do anything.
My kids were fine until their peers started making comments and they became
embarrassed. Throughout their childhood, there were so many disappointments,
when we couldn't go to their concerts because the baby sitter didn't show up or
because Jessica got sick.
I think as an advocate for your child, you learn so much. Your priorities
become more focused on what is really important in this life. I see such
healing in ourselves when we reach out and help someone else. And isn't that
what life is all about?
•
ELIZABETH LEVITT of New York City has three children:
Alison and Bradley, 4-year- old twins, and Carolyn, 1. Bradley has benign
congenital hypotonia, a neurological disorder that weakens motor muscles.
Children with this illness are born with weak muscles but their disability is
usually not apparent until they are beginning to walk and use their leg
muscles.
I KNEW something was wrong with Bradley very early on because he wasn't
reaching developmental milestones and his twin sister was running circles
around him. When he was about 20 months, he still wasn't walking. He had no
words.
My first tipoff came early in life, when he never rolled from his back to
his stomach. The pediatrician told me not to worry, and that really made me
angry because I feel I lost valuable time.
When he was 21 months old, he started to take his first steps and a
pediatric developmental specialist diagnosed him right away. His ankles were
caving in.
You are thrown into this industry you know nothing about. You are so
bewildered, so completely anxious. There are periods where you are depressed,
and there are times when you cannot believe how much improvement there is.
You constantly feel guilty, like this is my fault. "This is my child,
look what I've done to him." I don't know a mother that wouldn't blame herself.
That takes a lot of working in your mind to say it is not my fault. The other
thing is the need to explain. People look and you feel like you have to
explain. Maybe that's a feeling of guilt.
In the first year or two, Bradley was my full-time job. I think when
something happens to yourself or as a couple, you come together. But when
something happens to your kid, you become protective. I've become a total
mother bear — don't cross me, don't hurt my child.
I still don't know how this will affect Alison. I don't know how she will
internalize all of this. We just have to make sure she doesn't get angry about
all of the attention he gets. She doesn't understand it. He will say, "I
don't want to work today," but she looks and sees how much fun he is having.
I have to realize that he is enjoying his life. Bradley has this sunny
I-can-do-anything disposition. As long as he is not pressured, he picks up on
things that I wouldn't have noticed. He notices every little thing. I'm always
amazed that I can be rushed somewhere and he is moving in a slower pace and he
sits back and enjoys it.
I'm in a support group and we become advocates for our children. All of our
priorities have become focused on what is really important.
•
ANN HOTEZ of Rockville, Md., is the mother of four children: Matthew, 13; Emily, 11; Rachel, 8; and Daniel, 4. Rachel has a nonverbal learning disability, obsessive compulsive disorder and attention deficit hyperactivity disorder.
June 26, 2001
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VERY little is written about the mental devastation on the parents. From the
start, I always thought other parents had a much better handle on their
emotions and wondered why I was so upset.
Rachel is a very beautiful girl, but she has been a challenge from the time
she was 12 months old. My husband is a physician- scientist. When Rachel was a
toddler, we had two other children who were developing normally. We knew
something was wrong by the time she was 18 months. I thought it was odd that
she didn't play peek-a-boo or look me in the eye or play patty-cake. She was 2
and had a huge vocabulary and yet at the same time she had all of these
miserable behaviors, such as throwing things in the toilet and having a
high-pitched shriek.
You couldn't take her anywhere. In fact, I actually did hide. I would avoid
playgrounds because I didn't want to see other children her age doing
developmentally appropriate things. Rachel was recently diagnosed with
nonverbal learning disability. These children, like Rachel, are very good
communicators; however, they have major developmental delays in many areas,
including social skills, fine and gross motor skills. They also have learning
disabilities.
It's hard for me to sum up Rachel's behavior. She can be in the backyard and
will take any object and talk to this inanimate thing, like these plastic black
pipes. She focuses on an obsessive level.
What hurts the most is that my other kids don't like her to be in the house
when they have parties. She is loud and embarrassing for them. She has no
inhibitions whatsoever. She will say anything on her mind.
Lately, she has been waking up at 4 in the morning, turning on the
television and eating all the cookies and snacks. By the time we get up, the
house is trashed, like there was a party going on all night. It is really
difficult on the other children.
Sometimes as a parent you just want to be invisible. Relatives watch you.
Teachers watch you. It's not just the child's experience, it's how well is the
parent doing. You always go back in your mind: what did I do to have a child
like this?
After the diagnosis I was devastated, but I had two other children then so I
forced myself to be happy. I sort of kept the devastation to myself, but that
is impossible. I found special friendships, and I did a lot of reading and
worked through these issues in therapy sessions. Nobody prepares you at all for
this. They tell me not to think about the future and just live for today.
I think I've gotten closer to Rachel compared to how I was a year ago. I've
learned to laugh with her a little more. She can be oddly personable with strangers.
Sometimes in a food store, she'll examine all of the carts in front of her and
behind her and pick out items and ask the people about things, like chocolate
pudding. Then she'll ask if she can come and visit them. It's all a very
likable side of Rachel.
My husband has a stressful career and so most of the responsibilities fall
on my shoulders. I'm not really angry about that because we have to delegate.
But there were years I was resentful. You think you just have to be strong and
help the child, but the marriage suffers if you don't spend time, time without
the child. I do think if it weren't for Rachel, we wouldn't have worked so hard
on our marriage. The therapy we got to deal with Rachel has helped us as a
couple. I think, in the long run, the experience with Rachel has made our
marriage stronger.
My current interest is psychotherapy. I'm trying to start a new career
again, but it's difficult with four children and with Rachel. I went through a
major depression when Rachel was diagnosed, and it forced me to look inward and
re-examine myself. It forced me to re-examine my own abilities to handle stress
and grief. It's funny that such an inward illness can force a mother to move
out of herself and into the world.
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