Frequently Asked Questions - Parent to Parent

Parents share information and answer frequently asked questions about SIDS:

Many people ask, "What can I do to help?" What suggestions do you have?

We post aQuestion of the Month to the SIDS List Server Discussion Area and on the SIDS Information Web Site. Responses can be emailed to us atsidsnet1-at-sids-network-dot-org or posted to theSIDS 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 August 1997 is:

Many people ask, "What can I do to help?" What suggestions do you have?

Responses are listed below. Please feel free to add a response by e-mailingsidsnet1-at-sids-network-dot-org. Please include the question, your response, and include in the subject line "FAQ - Parent to Parent."

Just be there.

I have always been very thankful to anyone who allows me to talk about
Noah without looking like they want to runaway. I prefer that people
refer to him by name and not as "the baby". He was a person with a
name.Don't feel that by bring up the topic that you may be reminding me
that my child has died. I think about it all the time, and you are only
talking about something that I am thinking about anyway. I appreciate
That you remember that HE LIVED not only that he died. (6/22/97)

Plain and simple, "BE A GREAT LISTENER!"

Concerning SIDS: It's not the parents fault. Parents need to know: (1) They are not alone, (2) Someone is LISTENING; and, (3) Time will heal, but you will never forget (don't expect a parent to forget and PLEASE what ever you do... don't tell them they should be over it! At any time...).

For the Mothers: Mostly talk. Whether you as the listener, (you may be) hearing the same thing 50 million times (I know my friends have), you may hear all the stages of life, death, and thereafter. Be attentive and agree. Remember, that's all they have left, for right now, the memories.

For the Fathers: This is extremely important. Make is known that he as the Father has the RIGHT to be pissed, mad, angry, JUST AS the MOTHER may feel. A lot of times people forget and not intentionally, but exclude the Father. HE is just as important as the Mother. He also needs the acknowledgement, don't ignore his feelings. He may later (usually takes the male longer) open up and discuss. Just don't make or try not to make him feel obsolete! (7/31/97)

More than just being there, you need to talk about the baby. This child existed and no matter what nothing can replace them. Do not be timid to bring the child's name up, parents feel better knowing that you acknowledge the life of your child. Avoiding the issue makes the pain even worse. Being able to freely talk about the baby helps with the grieving. (8/14/97)

Just say you sorry if you really sorry. Don't say I understand you if you haven't loss a child. Don't say:"At least you have other kids", or "At least you will have more kids", because we don't cry for other kids, we cry for OUR DEAD KID. Don't change the subject when parents talk you about their dead baby, it is really helpful to face pain. Don't push people to overcome it, it takes different times to different people. It is really hard to parents when people acts like if nothing happened. It happened, and it is a nightmare. Just listen, most of the time all what we want is to share our feelings. Be there. (7/7/97)

Some close friends brought me some meals at the time of the death, which was very helpful. I could not concentrate enough to plan a well balanced meal.

My SIDS death was 6 years ago. I know some of my friends and family never bring up my son in conversation for fear of upsetting me. It is much more upsetting that they never talk about him. In my mind, I think all have forgotten him. You can be the most helpful by always remembering. Send a card on the child's birthday EVERY year. I have one friend that still calls me on the birthday and death anniversary. I can't explain how much it means to me. She just says, "I was thinking about you today.", and we take it from there. Never be afraid to talk about the child. Chances are the parent really wants to talk about it, and can't find anybody who will talk to them about it. (8/19/97)

When at first my son died someone asked and i screamed " yes my son ".I
have learned this is not the right answer. Now I just ask them to listen
to me when I need to talk and try not to be offended when I say
something they think is wrong. Or you can ask them to just help with
other children in the house. (9/12/97)

There is nothing nobody can say or do to take the pain away. You can respond by saying "you just did". I know you care and your words of comfort are appreciated. Thanks for caring. My son passed away of SIDS August 26, 1997. I cannot count how many times this was said to myself and my husband. There is essentially nothing they can do. But all the hugs, smiles, food, clean up, phone calls, cards (from strangers), flowers, and just being there to talk to is all us moms and dads need. (9/14/97)

My suggestions for help are:
- Express your sorrow, without suggesting why this happened, or that it will never happen again. Just "I'm so sorry."
- Let the grieving parents talk about their child. Let them replay every moment of the pregnancy, birth, etc. over and over, if they need to. Use the child's name when you mention him/her.
- People facing loss are just astounded that the world goes on. They feel their lives have ground to a halt. Take care of the bothersome details of everyday life. Please do not, however, presume to make any decisions about what arrangements they would want or whom they wish to see.
- Grief is real. Grief is natural. Grief is good. Burying the emotions, moving ahead quickly, avoiding the questions and overtures of those who love them makes for protracted grief that doesn't heal. (9/15/97)

Pray for us. Remember our child and mention him or her to us by name.
Remember birthdays/anniversaries with us. Let us talk about our child.
Don't tell us to "get on with our lives." (10/97)

The answer to this one is easy for me after three years of grieving for my daughter. Please mention the baby by name. If you have never seen the baby, ask to see photos, this will not increase the pain, how could it? One friend who did this still remains high in my esteem just because she made me feel that my daughter was a person and not just an unfortunate incident. And after a few weeks have passed since the funeral, still ring regularly to see how the family is coping. After about 6 weeks I really felt like no-one cared and that everyone had forgotten what had happened to our family. Don't give advice, please just listen. We won't always need to talk endlessly about our baby's death but the more you listen, the sooner we will start on the long road to acceptance. On the first Christmas after our baby died ( and she had never seen a Christmas) we received only one card which mentioned her name. I still have it and it meant so much to me. Remember birthdays and the anniversary of the death if only with a phone call. This is so important to many SIDS parents and while it doesn't really take away the pain it really helps to know that others remember our child and his or her life and death. And don't appear shocked by the dark thoughts and black humour that often emerge after a SIDS death. My SIDS friends here in Australia are often the only ones who understand me when I say something that would seem really off to anyone else. And finally just love us and care for us, it could happen to any of us at any time. (1/2/98)

Every year one of my sisters-in-law sends me a hand-made card on my deceased daughter's birthday, and on the anniversary of her death. She also sent a card the first mother's day after my daughter died. The cards are beautiful, and simply tell me that she is thinking of me, and remembering with me. Just knowing that someone remembers, that someone cares, even years after the tragedy, is so very, very important. (1/7/98)

I believe the best thing someone can do to help is to allow you to speak freely. A lot of people around us have said it makes them feel strange to be around when we speak of our son. It's as if they think we are depressed if we speak about him. This is not always the case sometimes you like to remember the life also. Besides if we need to cry its nice to know there are others who will let you without making you feel you are depressing them.

We buried our son on my 25th birthday. The best thing anyone had to say to me that day was by my Mother in Law, who said simply "Birthday", she knew Happy did not belong.

My husband's sisters and mother bought the three of us a gold coin charm with a guardian angel on it. We pinned one to our son and we each where one around our necks. Nathan would be 3 years and three months now, he now has a 6 month old sister who will most definitely know all there is to know about her brother. She has a charm waiting for her when she's a little older as will any other children we are blessed with. It is our way of keeping us all together until we meet again.

In closing I wish there was a way to make the world understand suggesting to us to forget is the worst thing they could possibly do. I worked with a woman who stated while I was pregnant "I hope this baby will make you forget your son, I think you need to let go." This got me so upset, I will never forget or let go of him. Would anyone say that to a woman or man who lost a 20-30-40-50 year old child. I do not believe so, time may allow you to know your child better but it does not change your love. Love is found instantly with a child, you never forget or let go of that kind of love, 1 day-100 years it does not matter. (1/8/98)

On 12-24-97, I lost my 2nd child to SIDS. A friend immediately bought me a journal, an Anne Geddes one which is full of beautiful pictures of babies, and said, 'Start writing!". I wasn't sure if I could or even wanted to at at first, but I can tell you now, I need/love that journal. It has been 4 weeks today since I lost my princess and I really look forward to many years from now that I can look back on the journal, show it to my other daughter who will probably not even remember her baby sister that she loved dearly, and share our daily tears, talks, & feelings. Please, do this for yourself or if you know someone who has lost a child recently, buy them one. I feel mine will be priceless to me later. (1/29/98)

We were so stunned the first 24 hours, that we needed help to continue functioning like: a cousin picked up our two and half year old from school and entertained her for a few hours until we had the courage to tell her of the death of her little brother, a day later, a friend came by with takeout food guessing that we had not eaten in hours -- he was right, an unknown but large group of people worked through the Brazilian bureaucracy to help us fly home quickly and bury our son within 4 days of his death,, etc.

We found lots of help the first month... it's months later that you need a lot of emotional support. Here is when a listening ear is the best help you can give.... And never say ' I understand ' because you can't possibly do. (3/6/98)

Besides listening and emotional support, help with the very practical. Newly bereaved parents have difficulty making decisions. Sort laundry, help with grocery shopping, and offer to watch other siblings.

One neighbor made dinner for our family every month on the date of our daughter's death for the first year. She knew that it was an especially hard day for us so dinner just appeared. Completely cooked. It was a wonderful gesture. (3/16/98)

I have not experienced a child of my own dying, but I have experienced the death of my nephew. I have heard this question asked of the parents and grandparents, usually before the funeral, however, it wasn't asked after the funeral.

My advice is,

If you REALLY want to help, you can do two things that would help a SIDS
parent TREMENDOUSLY. They are:

1) REMEMBER - birthdays & death dates.
2) Mention the child by name - you WON'T upset the parent by
mentioning the child - trust me.
3) Months later, when the child's name comes up (usually from the
parent), don't say "I don't know how you got through that" because
we HAVEN'T. We have no choice but to live on the best we can.

The most painful thing for me was that after about 6 weeks, everyone forgot. I was supposed to be "back to normal", and no one ever mentioned my daughter. I will NEVER be "normal" again, and I think of my daughter continually. I love to talk about her too!!!! Letting her live on through heartfelt talks and acknowledging her special days is the best medicine for grief I have found. (April 2, 1999)