In my time spent online I have discovered a few links that have been helpful to me since losing Toby. Hopefully, I can help you weed through some of the duds and find the ones that are actually useful. I'll add to the list as I find more.
Online Communities
Note: In many forums you will encounter people who have never lost babies to SIDS at all. They are simply there to either ask how they can "prevent" it (you can't, but you can reduce the risk) or they are there to tell you everything you did wrong. There are also those who get on the forums to tell everyone that their baby "almost died from SIDS." (Impossible. The name SIDS itself implies death. What they are referring to is an ALTE and that is completely different.) If you encounter these things on the board my advice is to walk away...
Daily Strength
http://www.dailystrength.org/c/Sudden-Infant-Death-Syndrome-SIDS/support-group
Daily Strength has one of the best active online SIDS support groups. It's been the one to hold me together. You can interact in the forums but also write your own journal entries that your friends can read. (Heck, if you think what I write on here is bad sometimes, you should see what I write in a more limited viewing community.)
Web Healing
http://webhealing.com/forums/
There is an active forum here, but like with many grief forums it can be hit and miss. You'd think that forums with people who have lost children would always be full of love. Mostly, they are. If you feel uncomfortable, just leave.
MedHelp
http://www.medhelp.org/forums/Sudden-Infant-Death-Syndrome-SIDS/show/205
MedHelp is a large website that has a lot of active members. The SIDS board isn't as active as the others but it might help you connect with other parents or at least read about others' experiences.
Information
The Sudden Death of a Child
http://www.compassionatefriends.org/Brochures/sudden_death_of_a_child.aspx
The Compassionate Friends Network has a brief, but kind of spot-on, brochure describing the loss of a child. It's one of the first things I read after Toby died.
First Candle
http://www.firstcandle.org/grieving-families/sids-suid/about-sids-suid/
This is kind of THE resource for SIDS out there. It's a support group/research foundation/information center...all in one. You can learn about autopsies, dealing with grief, and SIDS in general here.
SIDS Center
http://www.sidscenter.org/index.html
I don't always agree with their methods or lingo, but there is a ton of information here. Some of it is not exactly user-friendly, but if you are researching then you might want to start here.
American SIDS Institute
http://www.sids.org/
They often link to new research and studies that are out there. Otherwise, their interface is simple and easy to manage so you might have luck finding out the information you're looking for easily.
Resources
Bereaved Parents of the USA
http://www.bereavedparentsusa.org/BP_Resources.htm
This site has a lot of resources not only for parents, but grandparents and siblings, too. There are a lot of links that can hook you up with other sites that might be helpful.
The Cope Foundation
Online Communities
Note: In many forums you will encounter people who have never lost babies to SIDS at all. They are simply there to either ask how they can "prevent" it (you can't, but you can reduce the risk) or they are there to tell you everything you did wrong. There are also those who get on the forums to tell everyone that their baby "almost died from SIDS." (Impossible. The name SIDS itself implies death. What they are referring to is an ALTE and that is completely different.) If you encounter these things on the board my advice is to walk away...
Daily Strength
http://www.dailystrength.org/c/Sudden-Infant-Death-Syndrome-SIDS/support-group
Daily Strength has one of the best active online SIDS support groups. It's been the one to hold me together. You can interact in the forums but also write your own journal entries that your friends can read. (Heck, if you think what I write on here is bad sometimes, you should see what I write in a more limited viewing community.)
Web Healing
http://webhealing.com/forums/
There is an active forum here, but like with many grief forums it can be hit and miss. You'd think that forums with people who have lost children would always be full of love. Mostly, they are. If you feel uncomfortable, just leave.
MedHelp
http://www.medhelp.org/forums/Sudden-Infant-Death-Syndrome-SIDS/show/205
MedHelp is a large website that has a lot of active members. The SIDS board isn't as active as the others but it might help you connect with other parents or at least read about others' experiences.
Information
The Sudden Death of a Child
http://www.compassionatefriends.org/Brochures/sudden_death_of_a_child.aspx
The Compassionate Friends Network has a brief, but kind of spot-on, brochure describing the loss of a child. It's one of the first things I read after Toby died.
First Candle
http://www.firstcandle.org/grieving-families/sids-suid/about-sids-suid/
This is kind of THE resource for SIDS out there. It's a support group/research foundation/information center...all in one. You can learn about autopsies, dealing with grief, and SIDS in general here.
SIDS Center
http://www.sidscenter.org/index.html
I don't always agree with their methods or lingo, but there is a ton of information here. Some of it is not exactly user-friendly, but if you are researching then you might want to start here.
American SIDS Institute
http://www.sids.org/
They often link to new research and studies that are out there. Otherwise, their interface is simple and easy to manage so you might have luck finding out the information you're looking for easily.
Resources
Bereaved Parents of the USA
http://www.bereavedparentsusa.org/BP_Resources.htm
This site has a lot of resources not only for parents, but grandparents and siblings, too. There are a lot of links that can hook you up with other sites that might be helpful.
The Cope Foundation
This site is very comprehensive and one of my favorite things is called "The 10 Common Myths about Grief and Children." We forget sometimes that our other children are feeling grief, too. Even though Sam is only 5
he still mentions Toby every day and even sings little songs about him.
Faith's Lodge
This is an excellent place that has weekend retreats throughout the year, catering to parents who have lost children and other tragedies. The fee is almost non-existent and the setting is beautiful.
Compassionate Friends Network
This is a non-denominational support organization that has chapters all over the country. The website has a lot of helpful information and can also help you find a local chapter if you would like to attend a support group.
1 comment:
I'm a new follower. I lost my daughter March of 2011 and am now at the point where I would like to spread awareness and raise money for research. http://ashleyandolivia.blogspot.com/
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