I live in a sort of surreal world that very few people, thankfully, understand.
A lot of people are on different facebook groups and I'm now a member of several secret ones. I have also sought out other parents that lost children. These groups are places where you can talk away from the world and don't have to pretend. It's a place where you can talk about what you need to, examine the worst in your head.... and sometimes by examining it and talking to other people who look similar to you you can accept it as normal. Sometimes you get a little resolution, and other times it is like a bunch of women (men rarely join although they have at least one group of their own that isn't as active) that sit virtually together and face that there is no good answer.
This is our heart of darkness, but it didn't form from a cancer within, just a sort of insideous event that crept into our lives against our will, wishes, and best prayers.
I've been asked to talk at at safe sleep/sids conference and I think sometimes it would be an awkening for people to know what a parent experiences. I'm not saying any one person experiences all of them, but they are not uncommon.
1. Autopsy results- waiting, what does it mean, why can't they sit down in person and tell us what it does and doesn't mean.
2. Experiences during 'the interview'- experiences with CPS, PD
3. Medical personnel- did they do enough? Good experiences and bad. CPR.
4. Aspects of death- was this normal? What was that red stuff? When does XYZ set in.
5. Details of 'that day'- it always rolls around in your head
6. Taxes and facing that your child will no longer legally exist outside of this year.
7. How to avoid scum who steal your child's identity. By the way if some other crapster claims them, the IRS won't let you know who....
8. Children facing death of a sibling- do you let them go to the wake, nightmares, insecurities, sweet stuff they do, guilt over things they've seen you couldn't protect them from, going to the grave with them
9. Facing anniversaries and birthdays, the day child is dead as long as he/ she was alive
10. Suicidal thoughts- sometimes of members, sometimes spouses, what do you do when DH disappears and you are afraid he is dead or going to kill himself
11. The blame game- from spouses, relatives, strangers
12. Picking up birth and death certificates
13. Fear of it happening again to future infants, relatives who also lost children
14. Checking other children, fear of them dying
15. Motion monitors, precautions
16. Discussion of causes
17. Saying goodbye- cremation versus burial, the effects of autopsy on your child (some are not warned), lack of casket options, funerals, lingering debts, picking out final outfit, tombstone designs
19. Missing my child
20. People who pretend the child never exists
21. My child should be.....
22. Pictures and video- nobody asks to see them anymore outside of these groups, so women share beautiful pictures and memories
23. Flashbacks and coping with them, dealing with anxiety
24. Family members who support and don't support
25. Ways to remember your child- projects, charity, momentos
26. What do you do with clothing, objects, things associated with the death
27. Warnings to parents about their babies pictures being placed on a dead baby joke page (thanks facebook- free speach that terrorizes others isn't speach)
28. Dealing with depression and anger
29. Use of antidepressants, when, what, weaning off, facing loss again after going off them
30. Did you get XZY back from PD/ coroner
31. Marriage issues relating to child's death
32. Dealing with facebook- the 'God didn't forget you because you woke up' share stuff (when your child didn't wake up), random painful stuff popping up, blocking versus defriending people who hurt or don't understand you, going off the net because you can't say what you are thinking
33. Dealing with strangers (how many children do you have?)
34. How to include child in family photos, remembering them during family events and holidays
35. How much things or photos do you display?
36. How do you cope with children you associate with your dead child or connect randomly to their death?
37. Longing for heaven or feeling like everything has lost a little color or flavor, when will I care about silly things again
38. Compassion fatigue for people who don't see the big picture in life- worse days of my life involving car break down
39. Dealing with the feeling life is out of order- my child wasn't supposed to die before me
40. Questioning or effects on faith
41. Being taken to task by family for not acting normally, not celebrating happy events enough, talking 'too much' about child, still having up pictures/ keeping things, and not 'getting on with life'- often seen as rudeness or trying to alienate others.
42. 'Kisses from heaven'- little things, dreams, or supernatural events that are seen as messages that there is life after death
43. Supporting parents that are new