Frequently Asked Questions - Parent to Parent

Parents share information and answer frequently asked questions about SIDS:

The first year following the death of your baby is devastating and can be unbearable at times. What did you find the most helpful and nurturing during this time in your life?

We post a Question of the Month to the SIDS List Server Discussion Area and on the SIDS Information Web Site. Responses can be emailed to us at sidsnet1-at-sids-network-dot-org or posted to the SIDS List Server Discussion Area. We will then post the responses to this page of the web site. The responses are opinions and no one person is right or wrong. We do not need to include an individual's name or any other identifying factors unless the author requests to be identified in some way or they want their email address attached.

The question for May 1997 is:

The first year following the death of your baby is devastating and can be unbearable at times. What did you find the most helpful and nurturing during this time in your life?

Responses are listed below. Please feel free to add a response by e-mailing sidsnet1-at-sids-network-dot-org. Please include the question, your response, and include in the subject line "FAQ - Parent to Parent."

Without a doubt, the most helpful and nurturing thing has been to hear from
other parents who have lived through it and found a way to be happy down the
road. It is so hard to imagine that life could ever be any more than just
bearable. Talking to others who have been through it is the only thing that
has helped me see any light at all at the end of this very long, dark tunnel.. (25 May 1997)

I, myself, just made it through the first year of losing my baby. Truth be it know, nothing helped really. This group is the best thing if I had to pick something. At least here I can WRITE my feelings. I have no friends that are willing to talk to me, or family at that. My 3 yr. old kept me busy, but didn't ease the pain. There's a support group in my area that deals with a loss of a child, but not any mainly for SIDS. There, it just made me jealous, because they all knew why their child died. I know that doesn't ease the pain, but it just made me jealous. No one really listened to me. I guess I'm greedy, but I can't talk to real live people about my pain. Just this computer. It's partly my fault, because I don't show emotion around people, so I guess they just think I'm OK. I just wish a friend or family member would come up to me and say,"I know you still have a lot of pain, even if you don't show it. Just want you to know that I feel pain for you, and I'm always here for you." But that will never happen I guess. O-well. Just feeling selfish again I guess. Thanks for listening.

For the first year, after my baby died, it was tough! I don't think that it's a 'walk in the park' for any of us.

One of the things that I did was to go to a Home/ Health/ Hospice group called, "Good Grief". After she died, I just needed to be able to talk [and sometimes talk and talk and talk] about what had happened. It was the only place that 'felt' safe to share from my heart.

I wasn't 'allowed' to process this horror at home, because it upset my husband and just made things harder between the two of us. I talked, my husband clammed up. It was unbearable for me, not being able to get it out. It was hell for my husband because it was so painful for him to believe--it was easier for him to 'shut down' than to open up.

I learned that different people grieve different ways. I learned that there wasn't a 'set' pattern for the 'right' way or a 'wrong' way to grieve. We individually process things a different way.

I didn't 'do' anything in particular as far as 'nurturing', unless it was the class that I went to.

I went to church with my family--trust me, it wasn't easy to go there every Sunday. All I could think of and feel was my pain. I couldn't trust that God wasn't going to 'pull the rug out from under me' and do something to my 3 year old son. For me, trusting in God was a shaky step by step [one step forward, two steps back] process.

Moments when I felt like no one cared, or I was alone, someone wouldn't 'say' anything, just give me a hug. Sometimes, it was that gesture of simplicity- - -a hug, that helped me through that moment or day.

One thing that needs to be expressed is that there are very dark parts of that first year. Ones that are of Tsunami proportions that try to drag you under and sink you in the undertow. It's intoxicating, painful, hypnotizing in it's temptation to 'join' your little son or daughter. It was hard to fight. It was hard to breathe. It was difficult _NOT_ to give in to the thought of giving in and up. If there's someone that's struggling with that, just know that it's 'normal' but you need to undergird yourself with a support network- - -that can be tough in our society, since we have been taught to be INdependent, not INTERdependent.

I know that I'll never "get over it" that my baby is dead. But I am working through my disappointment and sadness. I'm working with girls that are right about her age, in a scouting program in our church. I'm helping them grow and learn about life. I find joy in helping others. There's where I feel needed, helping others. I'm grateful that there is a support network here. It was through coming here, that my husband began to openly [finally!] express his sadness and grief. Thank you for being here!!

Even though I had tremendous support from close friends and family members, I read everything that I could find from other SIDS parents. It was comforting to me to realize that I was not alone in this struggle. Also, whenever I felt that I was going crazy, other parents reassured me that they had felt similar feelings and that I was normal. The support that I have received from the Florida SIDS Alliance has also been valuable. Also, this list has helped. When I am having a "bad day," I can pull up e-mail, and there is always someone who understands exactly how I am feeling.

Without a doubt, the most helpful and nurturing thing has been to hear from other parents who have lived through it and found a way to be happy down the road. It is so hard to imagine that life could ever be any more than just bearable. Talking to others who have been through it is the only thing that has helped me see any light at all at the end of this very long, dark tunnel.

For me, the most helpful thing was the support and understanding of my wife.
Even when she didn't really comprehend the manifestations of my grief, she
was supportive and cooperative. I am constantly awed by her ability to give
when she hurts the most - that is why she is such a fabulous mother, not to
mention my best friend.

The next most helpful was the support from friends, family, and others
(Arizona SIDS Alliance, this email list, etc.) who knew the pain of SIDS and
of losing a child.

Finally, there was a cathartic benefit from dealing with my baby's memory in
various ways - making copies of photos for family, preparing the ceremony for
unveiling her stone, writing "89 Days of Sunshine", and other such
activities. They were tough to face, but good to have as part of my tribute
to her life.

Talking!!! I had talked and rambled. My friends have heard every thing and any thing at least 100 times even until the present. I have talked about pregnancy, labor, childbirth, breast-feeding, the three and a half months that he was alive, and the death, funeral, etc. YOU name it, I covered it. Every one of my friends know that's all I have left... MEMORIES. They also know and appreciate their own children because of it. (7/31/97)