Lost Child to Mito

Thank you for your very thoughtful question.  Unfortunately, there are many children with Mitochondrial Disease who will not live to see adulthood.   Holidays are an especially difficult time for grieving parents.  There are several excellent internet resources for grieving parents available on the web.  The Compassionate Friends, one such organization, issues a holiday press release with valuable information for grieving families and the people who support them.

Ten Ways You Can Help a Family During the Holidays After a Child  Dies: http://www.compassionatefriends.org/CMSFiles/X12808_Ten_Ways_Press_Release.pdf  Eight Things Not to Say to Bereaved Parents During the Holidays http://www.compassionatefriends.org/Libraries/PDF/Press_Release_2009_8_things_not_to_say_to_bereaved_parents-National.sflb.ashx

Ten Tips to Help You Survive the Holidays After Your Child Dies http://www.compassionatefriends.org/CMSFiles/X122007Tips_for_holiday_survival.pdf

Eight Holiday Gifts to Give Bereaved Families After the Death of a Child

http://www.compassionatefriends.org/CMSFiles/X12606Holiday_Press_Release_National.pdf

Getting Through the Holidays

By Nancy S. Hogan, PH. D.

Bereaved parents and their children have fundamentally different ways of anticipating and getting through the holidays.  These differences can lead to misunderstandings for both parents and their children which can result in additional burdens for already overwhelmed family members.  By understanding these differences parents and their children can find ways to help each other as they all struggle to find their way after a child’s death.

Parents, particularly in the first years following their child’s death, dread facing the holidays.  Grieving consumes their energy leaving them with little available for usual, daily events, and even less for the extraordinary efforts necessary to prepare for and go through the holidays.  Parents see and hear reminders of upcoming events which continuously remind them how much they have lost with the death of their child.  It is difficult for parents to go on with the usual “normal” family rituals like Christmas when there is so little “normalcy” in their lives.

Many parents would like to simply skip the holidays.  They grieve for their dead child and for the life that is permanently changed by the death.  They anticipate with anxiety how they will get through the upcoming Christmas and how they will be able to provide love and support for their surviving children and for each other.  They are preoccupied with how tragically their life has changed.  During this time parents take little comfort in hearing that holidays will get easier with passing years or that their fears about the holidays will likely be worse than the reality of living through the events.

In contrast to their parents, children grieve intermittently.  They go through moments of intense grieving in which they miss and long for their dead sibling.  These periods of grief are followed by intervals of relief.  Unlike their parents, children look for tangible signs and symbols that signify that the family will survive in spite of their sibling’s death.  They need evidence that their family will survive.  Tangible markers such as celebrating Christmas and birthdays, and having presents to touch and hold onto are the kinds of things that help children maintain hope that their family will grow strong again.

There are ways parents can plan to get through holidays and help their surviving children to be an important part of creating new family traditions.  What can you do to help yourself and your family to get through the holiday season?  First it is important to focus on how you can be spared from unnecessary stress, while at the same time providing your surviving children with hope for a time when your family can find meaning, purpose, and periods of happiness again.  You can do this by keeping some of the old traditions and by creating new ones that embrace the memory of your dead child or sibling.  You need to determine what is essential to do and to eliminate unnecessary holiday rituals.  For some of you this means forgoing sending cards this year.  Other parents may use the act of writing a holiday letter to inform friends of their family tragedy.

It helps to talk with other bereaved parents who are farther along in their grief about things that helped them get through the holidays and how this struggle changed over time.  For instance, some of you may find comfort in going away during holidays, while others of you will find comfort in staying home.  You may find using catalogs for Christmas shopping works well.  During this time, don’t hesitate to ask for help from friends and neighbors with tasks like getting a tree, trimming it and wrapping gifts.  Babysitters can help with these tasks and involve the children who benefit from the physical acts of preparing for Christmas.

If preparing the Christmas dinner requires too much concentration and planning, find restaurants or markets that sell cooked turkeys with all the trimmings.  One phone call can relieve you from worrying needlessly about how to do it all.  Some families have special candles they keep and light each year to represent the spirit of the dead child.  Other families hang all of the children’s stockings to signify the child’s permanent place in the family.  Children enjoy choosing a book or toy for children in hospitals, day care centers, or schools as a way of bringing some happiness to others in their brother or sister’s name.  I have found that bereaved children often have wonderful and original ways of remembering their sibling.  Invite them to help create new traditions in the family.  While it is impossible to “get back to normal” because that “normal” ended with your child’s death, it is possible and necessary to create a “new normal” that will become familiar and comforting as time goes on.

Nancy Hogan RN, Ph.D. conducts research and publishes on the parent and sibling bereavement process.  Since the mid 1970’s she has worked with TCF parent and sibling bereavement groups.  She authored the TCF tape “Impact of Grief on Marriage” in 1981, and has spoken at many national and international bereavement conferences.

Reprint policy: Proper attribution must be given to the author and We Need Not Walk Alone, the national magazine of The Compassionate Friends. Copyright 1998

For more information, refer to these organizations:

The Compassionate Friends. For more information on a local chapter, call The Compassionate Friends toll-free at 877-969-0010 or visit The Compassionate Friends national website at  www.compassionatefriends.org.

"The BabySteps Children's Fund is a non-profit organization offering information and support to bereaved parents and children suffering the loss of a child. BabySteps is named after the baby steps that form thlong and difficult road to recovery from the loss of a child." www.babysteps.com

Alive Alone is a non-profit organization that publishes a bimonthly newsletter for bereaved parents now childless and networks parents with no surviving children.  www.alivealone.org