Messages By: tnhorton

I lost my son Jack Thomas Horton from SIDS at six and a half weeks old. April 27, 1999 ~ June 12,1999. I started an online support group for families who have lost a child from SIDS on May 14, 2002 in memory of my son. My husband named the group "MAD AT SIDS" which stands for: Moms And Dads Against The Sudden Infant Death Syndrome.  

Since we founded MAD AT SIDS we not only serve the united states, we have also reached families in England, Canada, Belgium, and Australia.  

 Approximately a year and a half ago we became a legal organization, expanding our services to the public. Including a variety of other SIDS resourses, SIDS awareness projects, current research, and more. We are currently proceeding to non-profit to help provide additional services and accomplish future missions for the SIDS community. 

"Acceptance" 

Immediately after our loss, acceptance is farthest from our mind! These thoughts can last for a long time. In fact many of us don't even expect acceptance to be a part of our grieving process. And often times when we hear of acceptance for the first time, we are mortified by the thought. If this is the case, it is simply to early in our grieving process to "believe" that acceptance is a posibility. Basically this is a matter of feeling like acceptance means that we forget or get over it; when it doesn't mean that at all. Therefore, we do reach a point in our grieving where we not only believe, but also begin to work on acceptance a little at a time. These roads are still rocky; one day may be a good day & the next might not be as balanced. Eventually we get to a point where we have not only accepted our loss, but we have learned ways to honor our child as our angel.  

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Through my own experience with acceptance I think I had just as hard a time as anyone else did. In the begining, I remember my very first awakening was a glimps & on the day Jack died. The medical examinor was getting ready to wrap him up in a sheet as I was walking down the hall away from them....going to Tom in the kitchen. As I was walking down the hall I remember thinking to myself that my job as Jack's mother was over. That there was nothing else I could do to protect him, care for him, or help him revive from death. Little did I realize at the time, that was my first step into acceptance. Athough, I had a rocky road ahead of me for a while.  

For those who are interested in viewing my sons memorial web-site. Please feel free to view/sign his guest book, as well as browse his web-site.  http://www.geocities.com/tnhorton2002/BabyJack 

One of the negative things that I have noticed through the years is the fact that once a person gets what they came for....they move on to bigger & better things. A support group, I imagine of any kind; is a lot like that of private counseling. Simply for the fact that once the person is no longer battling with thier particular issue on a daily basis, the need for the group, or therapy is no longer a need.  

This saddens me on a personal level because in my case, as a SIDS support group moderator, I have watched many members drift away in time. Very few have stayed all this time; some I never hear from again; some only come back on those bad days; and others drop in a couple times a years to say hello & brief us with the current events in thier life. And even though they have moved on & got past the toughest part of grief (which is wonderful & what I am here for, I might add); however, thier child is still very much a part of thier lives. I suppose perhaps some people do other things in memory of thier child, rather than hanging on to some support group; however, I have learned that some have not & have just simply let it go. 

I have been bothered by this for some time now.....and wish I knew of a way to instill a better value in the need to pass it on to others.  

I have found through the past several years that other SIDS parents grieve much the same. We have many issues which are similar that cause additional conflict with our journey through grief. 

SIDS is different in many ways, just simply because it remains a mystery. For example, when it comes to "closure" with our child's death, we have something to call the cause, but we are still left in the dark as far as "what" exactly caused thier death.....what took thier life. Another example of additional conflict with grief is our children were "healthy" prior to thier death. It is unlike other causes of death which are either a health condition such as old age, cancer, etc.; or a sudden death such as gun shot, heart attack, fire, etc. These things are obvious reasons "why" the individual died. In other words, despite the fact our child was healthy, they died with no known cause.  

In addition to this, there is the sudden shock of our child dying at such a young age, when everything appears perfect. Because of this, extreme denial & shock always play a big roll in the beginning of grief for a SIDS parent. Automatically most people experience some form of shock and denial in the beginning of thier grief; however, this is one of the most extreme cases. 

When the shock wears off, the reality of thier loss hits very hard. It comes down upon you with a force that you never knew could exist until you have had the experience. The in-depth despair is one of which sends you to a level of emotion that you never knew you could be lowered to. A sadness that seems out of the norm. It is a scary place to be simply because it seems so intense that a person could not return from this state; however, they do in time. 

Almost immediately after the child's death, a parent seems to cling to "anything tangible". This helps not only through the beginning stages of grief, but also in remembering or honoring thier child. This "cling" can go on for days, months, or years.  

A SIDS parent automatically looks for other parents who have had a similar experience with SIDS. The reason for this is simply because we have found that through other support groups with multiple infant deaths, we are left with out the complete understanding of our experience. Needing someone to relate to completely, seems to be a great need through our journey of grief.  

SIDS Taboo is the main reason why SIDS remains so quiet with little awareness; unknown to new parents; lack of support for grieving parents; and much more!  

In regards to SIDS awareness: 

SIDS still to this day remains one of those topics that not many people prefer to talk about; rather it be those who have or haven't had the experience of this particular loss.  

Even the parents of a SIDS child (high percentage) tend to shy away from raising more awareness. The most common excuses for not getting involved more with the SIDS community & raising awareness are: The people in thier area are not open to the subject; lack of inner strength due to grief or afraid of failure; and too busy with thier daily lives to dedicate themselves at this particular time in thier lives. I personally have always thought that it is the SIDS parents who will need to change SIDS taboo ultimately. It is our responsibility to make a difference by speaking louder and more frequently. And that our voices are heard not because of thier death, but because of thier life! 

Much of the general public appear to be unconcerned about SIDS in general and seem to not even know what to say or how to feel about it. When approached about SIDS, they tend to freeze up; showing no emotion with a blank stare. This leaves the other person to feel frustrated and that thier efforts are a waist of time. They often times allow this to slow them down or stop making the effort all together. 

New Parents: 

Due to the following message, too many new parents are unaware of exactly "what" SIDS is. Of course no one knows the cause of SIDS; however, they are unaware of the risk factors, etc.  

Lack of support to grieving parents: 

There are many on-line support groups for families, however, there are VERY few "local" groups for parents to turn to through thier grief. This is a common complaint from many parents. And again due to lack of SIDS awareness, and people making more effort to change SIDS taboo; this remains unavailable to those who desperately need it. There are many local groups who offer assistance for grieving parents for multiple infant deaths; however, support groups for SIDS only is minimal.  

There are many wonderful organizations and foundations for SIDS who offer many services for the public such as: publications on the risk factors; financial aid; fund-raisers; miscellaneous projects; and events. However, very few of them offer grief support which is a grieving parents number one need.