Stories - ours and others:
Resources and Information
Resources and Information
This page updated April 24, 2005.
Trisomy 18. Incompatible with life. Infant loss. My baby. The thoughts float around in your head as you try to process this awful news. And the grief begins at diagnosis, when the hopes and dreams for your baby change in an instant. This type of grief, that begins before the actual loss, is called anticipatory grief.
It is very hard to describe to others what the grief of losing a child is like. And at times it feels like you must be going crazy. Until I became a bereaved mom, I did not understand the depth and extent of this grief. Bereavement is like nothing I have ever before experienced. I didn't realize it would be this hard. I have since realized that this is what is called grief work.
But what helped most of all was to journal. That is, to just sit down and write out what I was feeling. I often could feel myself relaxing after spending some time journaling, and I sometimes surprised myself by writing things that I didn't even realize I was feeling. In fact, I found journaling, writing, and reading about grief was VERY helpful to me. And so I am sharing some of my writings here online, both to help others understand and to help those who walk this path after me to know that they AREN'T crazy, that someone else has felt the same way, too.
To help you understand this grief, I have included my grief journal, some of my grief poems, some stories about grief, and a lesson I presented to the ladies of our church about God's role in our grief in my Writings about Grief. Although written to help others support you, the How to Help a Grieving Friend section may also help you better understand the grief you are experiencing and know what to expect in this journey.
If you are a friend who wants to help someone else go through their grief, thank you for reading this. Although everything here may be helpful to you, be sure to read the section called Helping a Grieving Friend which will give you guidance in how to support your friends through this long journey of grief, including what to say and what not to say. And to help you understand a little of the depth and extent of the grief, take a look at The Journey which is an allegory that many people have shared with their friends as an accurate depiction of what it is like to lose a baby.
But I am no expert on grief; I've just experienced it. There are quite a few good resources on the internet about bereavement and specifically about infant loss. I found it very helpful to learn as much as I could about grief and to read what others have written about their grief. Somehow it just made it a little easier to know that what I was feeling was normal.
For support specific to infant loss or the death of a child, SHARE Pregnancy & Infant Loss Support provides support to those whose lives are touched by the tragic death of a baby through early pregnancy loss, stillbirth or newborn death. A Christian-based support for infertility or the death of a baby can be found at Hannah's Prayer Ministries. I found a lot of good information in the newsletter from Mommies Enduring Neonatal Death (M.E.N.D.), as well as links to many other resources about grieving the loss of a baby. The M.I.S.S. Foundation provides support to families grieving the loss of an infant or toddler.
Of course, my primary online support came from the Trisomy 18 Support Foundation Online Community, which also has many grief resources and connections with families going through exactly the same thing.
Two other things that really helped me through my grief were doing things to memorialize my daughter (see Memorials) and my faith in God (see Where is God in our suffering?).
The grief is intense and painful, but it must be for us to receive the healing we need. May God give you the strength to walk through the valley, knowing that there is a river of joy on the other side.