I Lost My Two Children to Long QT Syndrome

I am so very sorry to hear of the deaths of your children Jimmy and Crissy to Long QT Syndrome.  I have worked with several people who have lost siblings to this syndrome and I know it is very difficult for those who are left behind.  There is also concern for your own health and for others in the family. This can be quite fearful and put you in the position of “waiting for the other shoe to drop.”  You may want to seek counseling to deal with this or work with someone who represents your belief system to clairfy your own thinking about death and what happens after death. You mention that your mother also has Long QT syndrome. Having great grandchildren, she must be an older senior  who has lived uneventfully with Long QT syndrome for all these years. Many who have Long QT never experience symptoms or any signs of a problem and live full, long lives.

 I hope that you have found an ongoing support group to discuss these issues with.  If not I would contact your local hospital and find a support group.  Also I would look for support on the internet for Long QT Syndrome. Here is a link that will give you some online chat groups about Long QT Syndrome that may be helpful - participants can most likely direct you to other groups and avenues of assistance.  http://www.familyvillage.wisc.edu/lib_long.htm You also might find it helpful to attend  some meetings of The Compassionate Friends if there is a group in your area. You can find information about them at http://www.compassionatefriends.com.

As a grandparent I also understand how difficult it is to be a bereaved parent as well as a bereaved grandparent.  You must take care of yourself so that you can keep memories of your children available for your grandchildren.

You might find it helpful to listen on Thursday mornings to the radio show Healing the Grieving Heart  You can find information about it and a link to it on the first page of http://www.thegriefblog.com  You might also find a number of past shows that can give you help and comfort at http://thegriefblog.com/grief-grieving-death-of-a-child/.  We often read letters on the show that we have received on The Grief Blog and we encourage you to listen to this Thursday show.

We will post your letter together with my response on The Grief Blog because we have found that every letter helps someone who may be in a similar situation. You may want to check back to it periodically because we have a group of loving and compassionate readers who reach out to each othe with love, compassion and helpful advice.

Best wishes to you and your family. 

Gloria