 After Sudden Infant Death: Facing Anniversaries, Holidays,
and Special Events
Introduction
Light a candle for hope, for remembrance. No
matter where you are, or which holiday it is for you, light
a candle for love, it is the greatest light of all.
—--Darcie Sims and Andrea Gambill ——
"Now it's hard to go down
the baby food aisle at the supermarket, to drive around town
and find out that life goes on, to walk up on someone sleeping,
to see pregnant women, to see ambulances, to see small babies,
to see little girls, to hear babies cry, to hear sirens, to
get through the holidays, to get through birthdays, to get
through the first day of school, to get through the day."
Printed with permission from: We Bring Her
Flowers, poems by Sharon A. Dunn
This booklet is dedicated to parents who have
experienced the painful times during anniversaries, holidays,
and special events after losing their baby to a sudden, unexpected
infant death.
The sudden death of your baby is a shock
for you, your family, and your friends. Every detail of what
happened plays over and over in your mind. The loss hurts deep
inside, and sometimes you can't stand the
pain. It is hard to believe that your baby is dead. You dearly
want your baby back. Grieving can be very personal and lonely.
Facing anniversaries, holidays, and special
events is a painful fact of life after your baby has died.
These occasions often test already fragile and weakened spirits.
The quotes by Sims and Gambill are taken
from Tinsel and Tears, Bereavement Publishing Inc., 5125 North
Union Boulevard, Colorado Springs, CO 80918.
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Sudden Infant Death Syndrome
Sudden infant death syndrome (SIDS) is the
sudden death of a baby under 1 year of age that cannot be explained
even after an autopsy, a thorough investigation of the scene
of death, and a review of the case history. No one understands
why some babies die like this, not even doctors and scientists.
There are some things that are known about
SIDS:
- There is no way to tell when SIDS will
happen. There are no medical tests to detect it.
- It is sudden and silent—--the
infant was seemingly healthy.
- Most SIDS babies die while apparently
asleep.
- The baby does not cry out. Death happens
quickly, and the baby does not suffer.
- It is a diagnosis after every other
possible cause has been considered.
- No one is to blame for the baby's
death.
Researchers who study SIDS think that some
babies have problems that doctors and medical tests still cannot
find. These problems cause babies to die suddenly, even when
they do not seem sick. SIDS is very hard for parents and even
professionals to understand.
Light a special candle—--not in memory
of a death, but in celebration of a life shared.
— Darcie Sims and Andrea Gambill
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You Are Not Alone
You are among the mothers, fathers, families,
and friends of over 2,000 babies who die each year from SIDS.
You are not alone in feeling confused and very sad in trying
to live without your baby. Difficult days may rule your life
for a long time, and many unanswered questions will remain.
You try to piece together clues, signs, or
reasons why a healthy baby died. You talk to other people about
your baby and about SIDS. You may find this hard and tiring.
Losing track of time and being unable to
perform simple activities are normal after a baby dies. The
daily routine changes in a lot of ways. Regular activities
such as weekly grocery shopping or visits with friends or family
become more difficult.
After a while, you will probably resume some
of your usual activities. But you also may decide that some
activities are too painful, such as visiting friends with children
and seeing them at play. Take your time deciding what is comfortable
for you.
Facing anniversaries, holidays, and special
events...
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Anniversaries, Holidays, and Special Events
Families observe cultural and religious traditions
on occasions such as reunions, weddings, graduations, and anniversaries.
During the days and weeks after the baby
dies, there will be special events that will certainly be different
without your baby. You will face celebrations that focus on
the joy of children such as Christmas, Mother's
Day, Father's Day, and Halloween. Holiday
reminders will be all around you in the stores, on television,
and in newspapers and magazines.
Holidays and special events are reminders
that life goes on around you. You will be torn between how
holidays and festive occasions are normally celebrated and
how you are going to celebrate them without your baby. You
may feel anxious, sad, and empty and may long to have your
baby be a part of the special times that usually involve the
whole family.
Some people may not understand your need
to talk about and remember your baby at these times because
they want you to "get on with your
life".
You may want to talk about the loss of your baby to SIDS for
a long time. This does not mean that you are not recovering
and coping with the death.
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What to Expect as You Face the Special Times
The first year after your baby's
death is very hard, and your baby's first
birthday and the anniversary of his or her death may also be
very difficult.
Even if you seem better, the sadness and
pain may return. It will be hard to be around other children,
especially babies. These are normal feelings.
It is OK to celebrate and enjoy these times.
It is OK to laugh and cry at the same time. You can go from
laughing to crying very quickly.
Other children in your family will need help
during the holidays to celebrate as they have in the past or
to understand why things are different.
What some parents do;
Some parents:
Choose to celebrate and participate in these occasions as they
always have in the past, but find it is a struggle. Sometimes
they even avoid talking about the baby who died.
Choose to do completely different things
during the holidays and special events. They may not participate
in any of the usual activities or traditions.
Try to balance their participation in holiday
activities and cope with the pain and sadness of missing their
baby.
These are difficult and personal choices.
Remember:
What you and your family decide to do for anniversaries, during
the holidays, or for special events is your choice.
Your participation in these events may be
very different during the first year or so. After a while,
you may go back to normal activities or permanently change
how you remember some holidays and special occasions.
Celebrating holidays and special events will
reflect your cultural background and traditions. It is important
for you to value these traditions because they are part of
your life during happy and sad times.
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Family Gatherings
Families gather for both sad and happy occasions.
Happy times and sad times often bring families closer together.
Holidays, weddings, graduations, and reunions
are times for celebration. Everyone is expected to be happy.
Relatives and friends want you to join in as you have in the
past.
Family and friends usually provide the most
comfort and listen to you as you try to cope with your loss.
But even the closest of relatives and friends cannot completely
understand the hurt that you feel.
Friends and relatives want:
To take your pain away;
to offer you hope
for better times
to see you "back
to normal again";
to
help you "forget
about what happened".
But:
No one can take your pain away
there will
be better times, but they will be different without your baby
your
life does not feel like it will ever be "normal"
again
you will never forget your baby.
Talking about SIDS with others...
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Talking About SIDS
It is hard to understand how babies can die
for no apparent reason. Explaining SIDS to others is difficult.
Sometimes it is helpful for a close friend or relative to provide
information to others for you.
Sometimes people have wrong ideas about SIDS.
SIDS is not caused by smothering, choking, infections, or allergies.
People may say things that are not true. Some people might
give you information that has not been proven or compare the
death of your baby to another death they know about. They offer
many types of information in the hope of helping you feel better.
Others may ask questions and make comments
about your baby. Sometimes their remarks will make you feel
like you did something wrong or that you did not take proper
care of your baby.
Remember:
You did not do anything wrong to cause your baby to die. There
was nothing you could have done.
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Making Special Times Easier
As you approach an anniversary, holiday,
or special event, do something to remember your baby and to
help ease your anxiety. Thinking about how you are going to
handle such an occasion is often worse than the actual event.
For example, having a memorial service or going to the cemetery
before the occasion might comfort you.
Realize that sadness and confusion may remain with you during
these times. Feelings of anger, pain, and loss of control do
not necessarily mean that you are not recovering from the loss.
Make changes in the way you celebrate holidays
and special events. These changes may be temporary or permanent.
Take care to remember that other children
and family members will want to continue to celebrate the occasion
as usual.
Start a new tradition in memory of your baby.
Talk or write to other parents whose baby
has died. Find out how they have coped with the special occasions.
Celebrating the special times does not mean
forgetting about your baby.
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Memories
The memories you have of anniversaries, holidays,
and special events are of celebrations and family times together.
Now you face these times feeling empty without your baby. You
have a different outlook about such occasions and may have
images of how you would have shared the moments with your baby.
While sadness will remain with you forever,
the memories of your baby are some of the most important "keepsakes"
you will have. You can treasure them. You can share them with
others.
Family and friends often feel they will cause
you more pain by talking about your baby. Let them know if
you want to talk, and together you can build memories.
As time passes, happy memories of your baby
will gradually replace the sad ones, and you will be able to
laugh again.
"What we have once enjoyed and deeply loved
we can never lose, for all that we love deeply becomes a part
of us." Helen Keller
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For More Information
Contact
The National Sudden and Unexpected Infant/Child Death and Pregnancy
Loss Resource Center
Georgetown University
Box 571272
Washington, DC 20057-1272
(866) 866-7437 (toll-free)
(202) 687-7466
(202) 784-9777 (fax)
info@sidscenter.org
http://www.sidscenter.org
Publications
The publications listed below are available free of charge
from the Resource Center.
Fact Sheet: What Is SIDS?
Fact Sheet: Parents and the Grieving Process
Selected Resources for Grieving Parents,
Their Families, Friends, and Other Caregivers
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Other Organizations
The following organizations may be helpful sources
of information on coping with a SIDS death or other early infant
loss. Every effort is made to ensure that the details for each
entry are as current as possible.
Alliance of Grandparents A Support in Tragedy
(AGAST)
P.O. Box 271386
Salt Lake City, UT 84127-1386
(888) 774-7437 (toll-free)
reachout@agast.org (e-mail)
http://www.agast.org
Association of SIDS and Infant Mortality
Programs (ASIP)
8280 Greensboro Drive, Suite 300
McLean, VA 22102
(800) 930-7437 (toll-free)
(703) 902-1320 (fax)
info@sidsprojectimpact.com (e-mail)
http://www.asip1.org
Centering Corporation
7230 Maple Street
Omaha, NE 68134
(402) 553-1200
(402) 553-0507 (fax)
centering@centering.org (e-mail)
http://www.centering.org
CJ Foundation for SIDS
The Don Imus-WFAN Pediatric Center
Hackensack University Medical Center
30 Prospect Avenue Hackensack, NJ 07601
(201) 996-5111
(201) 996-5326 (fax)
(888) 825-7437 (toll-free)
http://www.cjsids.com
The Compassionate Friends National Office
P.O. Box 3696
Oak Brook, IL 60522-3696
(630) 990-0010
(877) 969-0010 (toll-free)
(630) 990-0246 (fax)
nationaloffice@compassionatefriends.com (e-mail)
http://www.compassionatefriends.org
First Candle/SIDS Alliance
1314 Bedford Avenue, Suite 210
Baltimore, MD 21208
(410) 653-8226
(800) 221-7437 (toll-free)
(410) 653-8709 (fax)
info@firstcandle.org (e-mail)
http://www.firstcandle.org
National SIDS/Infant Death Program Support
Center
1314 Bedford Avenue, Suite 210
Baltimore, MD 21208
(410) 415-6628
(800) 221-7437 (toll-free)
(410) 653-8709 (fax)
kathleen.graham@firstcandle.org (e-mail)
http://www.firstcandle.org/health/health_human.html
International Stillbirth Alliance
1427 Potter Road
Park Ridge, IL 60068
info@stillbirthalliance.org (e-mail)
http://www.stillbirthalliance.org
M.I.S.S. Foundation
P.O. Box 5333
Peoria, AZ 85385-5333
(623) 979-1000
(623) 979-1001 (fax)
info@missfoundation.org (e-mail)
http://www.missfoundation.org
National Center for Cultural Competence (NCCC)
SIDS/ID Project
Georgetown University Center for Child and Human Development
University Box 571485
Washington, DC 20007
(800) 788-2066 (toll-free)
(202) 687-8899 (fax)
cultural@georgetown.edu (e-mail)
http://www.gucdc.georgetown.edu/nccc
National SIDS and Infant Death Project IMPACT
(Infant Mortality and Communication Tools)
8280 Greensboro Drive, Suite 300
McLean, VA 22102
(703) 902-1260
(800) 930-7437 (toll-free)
(703) 902-1320 (fax)
info@sidsprojectimpact.com (e-mail)
http://www.sidsprojectimpact.com
SHARE Pregnancy and Infant Loss Support,
Inc.
St. Joseph Health Center
300 First Capitol Drive
St. Charles, MO 63301-2893
(636) 947-6164
(800) 821-6819 (toll-free)
(636) 947-7486 (fax)
share@nationalshareoffice.com (e-mail)
http://www.nationalshareoffice.com
SIDS Educational Services, Inc.
2905 64th Avenue
Cheverly, MD 20785
(301) 322-2620
(877) 935-6839 (toll-free)
(301) 322-9822 (fax)
sidses@aol.com (e-mail)
http://www.sidssurvivalguide.org
SIDS Network, Inc.
P.O. Box 520
Ledyard, CT 06339
(860) 892-7042 (toll-free)
(860) 887-7309 (fax)
sidsnet1@sids-network.org (e-mail)
http://www.sids-network.org
Rev. 2005
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