Please tell me again it's ok to be sad

[Rayna']

This weekend has been hard for me because it was suppose to be both my babies' first easter. I know I am blessed with a wonderful son but man this really hurts & I can't make it stop. My husband tells me that they both love me & I know that they do but a part of me still feels like something is missing. I want a sibling for Coleman so bad but then I am scared of the heartbreak again. I have my 3 month followup with my doctor tomorrow thank god so I'll see what he says. I just keep going up & down. I'll be doing good and them BAM something slaps me in the face & it is hard to get back up.

[Janeice]

I wish I had some encouraging words for you. I understand the let down. I feel the same way, its like ok, havent cried for a while, then out of the blue my attitude comes up, I get bitchy and *****, and just need to cry. Once I get that cry in, I am ok for a while again. Its been 7 months since Renny was born. I cant help but want to fill the void. I know I can't replace him, scared to know what it will feel like to have another baby knowing I have one that didn't survive. crazyness feelings of what if. I'm here for you Rayna'. Peace be with you. Better days ahead.
Janeice

[Rayna']

Don't you just feel crazy sometimes? There's just something heavy on my chest & I just want to scream it out of me. The more I feel like I have to hold it inside the more I want to let it all out.

The "what should have been" lately has been really hard. I can't imagine what Mother's Day is going to be like for me & for everyone else here that has lost a child.

[Lindzy Foster]

im so sorry rayna i know i feel sometimes like im crazy too...darin and i both had a very bad weekend some "friends" are now telling us we use Kaydence as a crutch to get people to feel sorry for us...yeah like any of us wanted to lose our babies...im so furious with these people right now...and ur right the ups and downs are crazy like a roller coaster and i keep losing things i feel like im losing my mind some days....i am definately thinking bout u...and praying for everyone here especially with mother and fathers day coming up...
Lindzy

[anr0014]

I am thinking about you and all of the rest of us who know what today feels like. I hate that we all know what this feels like. It just isn't fair.

[Tasha Nicholls]

darin and i both had a very bad weekend some "friends" are now telling us we use Kaydence as a crutch to get people to feel sorry for us...
Lindzy

:eek::mad::mad::mad:

The insensitivity "friends" like that show you guys at times like this just blows me away. Time to get new friends.

[Tasha Nicholls]

I'm so sorry that all of you have to go through this.

*HUGS*

[Rayna']

:eek::mad::mad::mad:

The insensitivity "friends" like that show you guys at times like this just blows me away. Time to get new friends.


Alot of the time feel that my husband thinks the same of me. It's like I irratate him when I don't want to go do things on holidays because I am down. Like I'm using it as an excuse not to go. I guess since I lost both babies in the first trimester last year it's not the same for him. But you would think that since he was at the doctors office both times when we were told there wasn't a heartbeat, he would have more compassion. I SCREAMED and cried in the ultrasound room. I screamed with all my being...I was so devasted. It's like I have to have a nervous breakdown for him to realize how hurt I am.

I am so glad I have a doctor's visit today.

[Amber Schmidt]

Rayna... I hope your doc appt goes well today. I cannot even imagine what every family on here must go through every single day. My heart just aches. I do have to say thank you. Your families and angels help me appreciate day to day life. thank you for sharing with us!

[Janeice]

I want to hold on to his memory sooo bad. I wish I could have even a day with him. I force myself to try and move on, but I find my self stepping back down. I leave the pictures at home while I go back trucking, find myself searching my computer to browse them again, flipping through my phone to see him again. I find the more I try to push the memory away, the more consistent I get with my mood swings. I don't want to forget, but I feel guilty for trying to remember. I'm stuck between a rock and a hard spot and he (my man) just doesnt get it. He doesn't understand why I want to "beat my self up" (as he puts it) with his memory. I just want to SCREAM!!!!! I feel like I am going through this alone. I love to come here because I can relate, its the only thing that feels real anymore. I am back on the roller coaster again! Back to pushing everyone away to grieve again. I wont even go to my friends and families houses if there is a baby around. I hate feeling like this because I love babies, but the thought of being around one right now makes me angry. I can't wait for this "phase" to pass once again! Whoever said grief is in steps is wrong, its more like an elevator. You press the button for the 5th floor, but you jumped on the one heading down! CRAZYNESS

[Rayna']

He doesn't understand why I want to "beat my self up" (as he puts it) with his memory. I just want to SCREAM!!!!!

yeah, I've had family members tell me "think positive" or "don't think about it if it makes you sad". They were totally clueless! It's hard to think positive when you've had two babies taken from you within 8 months. Arrrrghhh! I finally had to tell them to read my blog on Myspace to get a clue of what I was dealing with.
Yes it is lonely to be in the "I lost a baby" club. It does help to come here & talk with others about our situation. Just like the topic in this post, I just needed to hear it from SOMEONE who understands what I am going through that it is ok to be sad.

[Janeice]

Rayna-
I have come to learn there is a seperation between "us" and "them." I now refer to everone else who hasn't encountered our situations as "the others." They just don't understand. Maybe that sounds harsh, but I feel alienated away from the world as I used to know it. Its hard to find comfort sometimes. I try to keep "the others" blind to my pain, but sometimes it just comes out, does that make sense? I have to remind myself constantly that not everyone needs/wants to hear my cry story. I could talk all day about my angel, but people think I am feeling sorry for myself, or that I want them to feel sorry for me when I talk about him. That is soo not the case. He just lives in me, and it brings me joy to talk about him. Even if I cry in some strange way I feel better and it brings me peace at the same time I feel sad and lost. I cant find the words to describe my feelings, ya know. God knows. He doesnt need words. He understands, just as all of us here understand with out words. Its strange too, I also have an 8 year old. (He lives with his dad) He seems to understand my pain more than anyone in my family. I thank God for him. He is such a blessing in my life. He really gets me through the tough times. We have a connection that is unexplainable. Maybe that is the mother/child bond. I am just totally rambling now, I do that, sorry. :rolleyes:
Janeice

[Cheryl Haggard]

I could talk all day about my angel, but people think I am feeling sorry for myself, or that I want them to feel sorry for me when I talk about him.

This also happens to me. All I can say is "Shame on them..."
There are those in my family, that still just don't get it. Why was this organization started? It was started so families would have a way to always remember. This is where our healing comes from. By remembering, not forgetting. And if my family can't get it...(sometimes I just want to throw my hands up in the air), what's the point.

We all need to do what we need to do. Not what "others" want us to do. For "others" its too easy to forget. Even those closest to us...

[Cheryl Haggard]

Cute quote:
I want to put this on a t-shirt...


'Everybody wants to go to Heaven,
but nobody wants to die...'

[Rayna']

Rayna-
I have come to learn there is a seperation between "us" and "them." I now refer to everone else who hasn't encountered our situations as "the others." They just don't understand. Maybe that sounds harsh, but I feel alienated away from the world as I used to know it. Its hard to find comfort sometimes. I try to keep "the others" blind to my pain, but sometimes it just comes out, does that make sense? I have to remind myself constantly that not everyone needs/wants to hear my cry story. I could talk all day about my angel, but people think I am feeling sorry for myself, or that I want them to feel sorry for me when I talk about him. That is soo not the case. He just lives in me, and it brings me joy to talk about him. Even if I cry in some strange way I feel better and it brings me peace at the same time I feel sad and lost. I cant find the words to describe my feelings, ya know. God knows. He doesnt need words. He understands, just as all of us here understand with out words. Its strange too, I also have an 8 year old. (He lives with his dad) He seems to understand my pain more than anyone in my family. I thank God for him. He is such a blessing in my life. He really gets me through the tough times. We have a connection that is unexplainable. Maybe that is the mother/child bond. I am just totally rambling now, I do that, sorry. :rolleyes:
Janeice

It's like looking in a mirror...lol...I have the same situations although I didn't get to meet my babies. Everything you just wrote above is exactly me. So you are making TOTAL sense to me.:) My son (5 yrs old) is very sensitive about me & we talk about "our babies" all the time. He always tells me that he wished that he could had seen them. And I tell him that they were too little to see so I didn't get to see them either. We talk about the babies being taken care of in Heaven with Pawpaw Coleman (his great- grandfather). I have always encouraged him to talk to me about the babies, but I've had to tell him not to mention it to others because they get uncomfortable when he says, "You know...our babies died." Sweet boy!

[Kirk Kief]

I'm a 'Them'. However, because of my involvement with NILMDTS, I'd like to think I'm a "Us-em" That'd be someone between a 'Us' and a 'them'. For the true 'thems', do you feel that maybe their attitudes might be coming from a sense of fear? A sense of fear that if they did understand, then they too would feel the same depth of grief as you do? A sense of fear that the saying 'But for the grace of God go I' might come true for themself in the future? Fear stems from the unknown. We fear what we do not understand. Maybe if we could educate even just one person per week to understand that the loss of an infant is just as devastating to you as is the loss of a Husband, Wife, Mother, or Father to them.
Maybe this is our next hurdle to get over. We have been somewhat successful in turning the attitude around of having images made of new little Angels, maybe now we need to try and turn the attitude around that it is okay to grieve the loss of infants the same as you would any other child or adult.
Does this make sense, or does this put me back into the 'Them' column?:o

[Bill Tilton]

As I was reading the above posts, I was thinking about how I might comment. And then I discovered that Kirk had said most of what I was thinking. I don't feel like an "us" either. I understand what we are doing is helpful and I understand these are hard feelings to deal with. I wouldn't have any difficulty talking to a parent about the grief of having lost their child. But I don't think I will ever really "feel" what they are feeling — never really be an "us."

In addition to the fear, I think there are several other factors. First is the desire to "fix" whatever is wrong — maybe that's a bit more of a guy thing, I don't know. But there is a desire to offer suggestions to "make it all better." I do think some of these "suck it up and get on with it" comments are an honest desire to fix things. That obviously isn't helpful, but I believe it is said with the best of motivations. Of course, for these events, there is nothing that can be done, except listen. And that's hard.

The second thing is that we don't know WHAT to say and we're afraid of saying the wrong thing. There is a tendency not to linger in conversations like that very long and to head back for some safe territory. We also haven't been thinking about how this would be your child's first birthday, Easter, Christmas, etc. And we haven't been thinking about what your child would be doing, saying or thinking at this stage in their lives. If your child had lived, we would be commenting on how he's going to be tall, just like his daddy or has her mother's smile or any number of other observations. But we've never seen this child, never heard them cry or laugh... So, we're in a situation where we might say the wrong thing, can't contribute much and have a situation we can't fix. It's not a comfortable place to be.

Keep the communications open with the "thems" of the world. Try to be patient and understand where they are comming from too. Instead of backing away, use every opportunity to educate them on why this work is important. And don't expect 100% success!

Bill

[Tammy]

Many years ago, a good friend of mine lost her first daughter. I, at the time did not have children of my own... not even sure I was married yet.
My friend wanted to talk about her daughter, asked if I wanted to see a picture of her. I said, "sure." A poloroid image of this beautiful, tiny baby was presented to me.
I didn't have a clue what to say.... I stumbled. "I" did not want to talk about this "I" did everything to change the subject. "I" was not the friend I should have been because "I" did not understand, "I" did not want to hurt.
If only.... I would have known then, what I know know.... having experienced the same loss... if only.....
Knowledge is power, and education is the key.....

[Rayna']

I agree with you Bill. I have been trying to learn how to teach others around me what "we" are going through & what you can do or say that will help us. I think somewhere on here someone recommended this below & I emailed it to everyone that I knew.

Bereaved Parents Wish List
Compiled by Diane Collins, TCF, Bay Area


1. I wish my baby hadn't died. I wish I had him back.

2. I wish you wouldn't be afraid to speak my baby's name. My baby lived and was very important to me. I need to hear that he was important to you also.

3. If I cry and get emotional when you talk about my baby, I wish you knew it isn't because you have hurt me. My baby's death is the cause of my tears. You have talked about my baby, and you have allowed me to share my grief. I thank you for both
.
4. Being a bereaved parent is not contagious, so I wish you wouldn't shy away from me. I need you now more than ever.

5. I need diversions, so I do want to hear about you; but I also want you to hear about me. I might be sad and I might cry, but I wish you would let me talk about my baby, my favorite topic of the day.

6. I know you think of and pray for me often. I also know that my baby's death pains you too. I wish you would let me know those things through a phone call, a card or note, or a real big hug.

7. I wish you wouldn't expect my grief to be over in six months. These first months are traumatic for me, but I wish you could understand that my grief will never be over. I will suffer the death of my baby until the day I die.

8. I am working very hard on my recovery, but I wish you could understand that I will never fully recover. I will always miss my baby, and I will always grieve that he is dead.

9. I wish you wouldn't expect me "not to think about it" or to "be happy." Neither will happen for a very long time, so don't frustrate yourself.

10. I don't want to have a "pity party," but I do wish you would let me grieve. I must hurt before I can heal.

11. I wish you understood how my life has shattered. I know it is miserable for you to be around me when I am feeling miserable. Please be as patient with me as I am with you.

12. When I say, "I'm doing okay, " I wish you could understand that I don't "feel" okay and that I struggle daily.

13. I wish you knew that all of the grief reactions I'm having are very normal. Depression, anger, frustration, hopelessness, and overwhelming sadness are all to be expected. So, please excuse me when I'm quiet and withdrawn or irritable and cranky.

14. Your advise to "take one day at a time" is excellent advice. However, a day is too much and too fast for me right now. I wish you could understand that I'm doing good to handle an hour at a time.

15. Please excuse me if I seem rude, certainly it is not my intent. Sometimes the world around me goes too fast and I need to get off. When I walk away, I wish you would let me find a quiet place to spend time alone.

16. I wish you understood that grief changes people. When my baby died, a big part of me died with him. I am not the same person I was before my baby died, and will never be that person again.

17. I wish very much that you could understand-understand my loss and my grief, my silence and my tears, my void and my pain. BUT, I pray that you will never understand.



Yeah, you really do try to be patient & understanding, but when you are at your lowest & someone basically says "get over it" it's like a stab in the heart. If I hadn't experienced all of this myself then I would definately be one of "them". You really don't know if you haven't been there.


Maybe this is our next hurdle to get over. We have been somewhat successful in turning the attitude around of having images made of new little Angels, maybe now we need to try and turn the attitude around that it is okay to grieve the loss of infants the same as you would any other child or adult

I agree Kirk! Even though some of us on here haven't had this type of loss everyone is contributing in their own special way of changing the way people think one person at a time. I really appreciate everyone here & their great efforts to help "us" in our great time of need.

[asquad]

Rayna~~
I LOVE this wish list. I think i will be sending it out this month to my friends and family as April 28 is my 3rd loss, Aaron's, bday. As many of us know all too well, it's been a rough past several weeks.

About how "thems" don't know what to say----I truly believe they just honestly DON'T know what to say like Bill said. It's not that they don't care, they just feel helpless and DON'T know what to say.

To "Thems": As I've shared before, I lost baby Mae at 9wks m/c, perinatal loss of Adam after 10 hours 6 yrs ago, and Aaron was born sleeping at 37 wks last April. I hate to even have to say it but I HAVE BEEN THROUGH it all. My best advice comes to you from my heart to help you in times of not knowing what to say. My advice it to...........................not say anything, JUST BE THERE!! LISTEN!! HUG AND HOLD!! If you feel like you need to say something, "I'm so sorry" is my choice. The biggest and most heartfelt advice to you is.................DON'T FORGET "US"! Everyone else's lives go on, the next day........ the next week....... the next month........and for us the cards stop within the week. Please don't forget! Don't only send little notes of "thinking of you" but take the time to sit down and call or go by and see. One of my good friend, who too has lost a babe to potter's syndrome--inbewteen my 2nd and 3rd loss so actually I relived everything there as if it were my own---anyway, I see her at the girls' ballgames and she says, "I think of you everyday and I've been meaning to call you." I don't think she knows how that hurts. If I am that fresh on her mind and important to her then why doesn't she call. Once again, I think her life went on.
Please don't take my comments as harsh........I mean the best intentions by them, trying to educate as you requested.
I admire you all who do what you do for those of us who have lost. You are very strong people.
XO
Penny

[Janeice]

I'm a 'Them'. However, because of my involvement with NILMDTS, I'd like to think I'm a "Us-em" That'd be someone between a 'Us' and a 'them'.

Kirk-
That was great!! That there was awesome and just made me laugh. I needed that. Thanks for that. You and Bill, to me, are "Us' " You are involved, although you may not be directly connected (experienced a loss of a child first hand), you are indirectly connected. You guys offer your support all the time to everyone. It really is awesome that you have been converted from "them" to "us" without experiencing the pain. I really do appreciate the fact that you guys are so involved. Gives me the warm fuzzies to see how much you guys volunteer your support and how dedicated to this organization you are not being "directly connected". I'm trying really hard here to say the right words. LOL Do you catch my drift. I'm complementing you, all of the former "thems" in this organization. A BIG THANK YOU!! THANKS FOR CARING!

Janeice :D

[Lindzy Foster]

Kirk i think that what you said about the fear of the unknown may be right on...i do try to educate people that i come into contact with about dealing with bereaved parents and i do share the bereaved parents wish list with everyone i know...like Rayna i have a myspace and in my blog i share these things as well and try to bring awareness to infant loss to anyone that happens to read it...but there is a point where people fear what they do not know and if they cannot get past that fear they cant even begin to understand what the pain is like...the friends that i wrote in my previous post about say that they would like to understand but in reality they have not been willing to try an make an effort to understand...i've asked them to read my blog, to come to the NILMDTS web site and read some of the info and stories or to just sit down and listen to how i really feel instead of just asking me how i am and expecting me to say "ok" but the response i got from them is that they dont have time, and thats just an excuse and when i told them that they said maybe it is, so how do you get thru to people like that?? they complain that we dont try to tell them how we feel but when i do they just dont "really" listen they still dont get it...but i will continue to try and educate them and others as much as i can and know that it will make a difference if only one person at a time...

[Cheryl Haggard]

"I think of you everyday and I've been meaning to call you." I don't think she knows how that hurts.

Penney, so true, so true...

[Rayna']

Quote:
"I think of you everyday and I've been meaning to call you." I don't think she knows how that hurts
.

Penney, so true, so true...
__________________



.

Penney, so true, so true...


That got me to thinking...I recently started talking again to an old high school friend. She's 33 & is dealing with breast cancer. For the first couple of weeks I would call her but then got so self involved in my issues I haven't called her. I keep leaving comments on her Myspace when I get a chance & say the same thing "I've been meaning to call you". I will call her tonight for sure!

[Cheryl Haggard]

I am guilty, too. I have the best intentions, but then get sidetracked with so many things.

So, with that said, I have been meaning to put alittle something in the mail for Sarah, and to a friend of mine, who's sister just lost her 21 year old son to leukemia...Today, it will be done!!!

[Karla]

I haven't been posting lately simply 'coz I've been in a drag....experiencing all the emotions written on this thread. I actually have been feeling as sick as I was when I was pregnant with Cydney and this is actually that time two years ago!!! I know it's mind games but in my crazy disposition I wish it were truly morning sickness!!! I know I am 90% close to being crazy, I pray for a miracle that what I am going through never did happen, I pray that my little girl is playing hide and seek with me and I have to find her. My heart feels numb, no one around me understands, or even care enough to pretend that they do. In addition my living situation is horrible, I daily relive the morbid words of my MIL that she would die if my daughter live, well I question whether she thanked God when Cydney returned to heaven. I feel a deep seethed anger developing towards her as the days go by and I cannot hear the innocent and beautiful sound of my daughter's voice. And to make matters worse, I need to go back to school. I am so scared to, I have no idea how to make that step, Classes have started, exams are on July 11th and I am scared, I feel sick thinking of it, it makes it so real that I don't have my baby to look after. I do not even want to hear that I should do it for her, because I can only do it because she is not here. I am struggling, I truly am, and all I could wish is that I find strength to move on....


PS... Cheryl, did you send out your notes to Sarah and your friend????


Love to everyone,
Karla

[Lindzy Foster]

Karla,
Im so sorry i was i could find words that would make it a little better for you but i know that nothing really helps, i wish sometimes that it were possible for all from this forum to get together in one place and meet it would be so nice, maybe something like that needs to be done?? does NILMDTS have conferences like MISSing Grace does? Last week I went to a NILMDTS meeting in Omaha at Tina Marie's house and it was very nice to be able to meet Brooke Storm in person...I have been thinking about Cydney Paige and you alot lately, I know how upset you are I harbor some very angry emotions with my surgeon because he chose not to keep Kaydence on life support long enough for us to go and be with her when she passed, it upsets me so much that they told us they would and then were not allowed to be with her...and they wont give us any reason for it...it upsets me greatly that Cydney Paige wasnt able to get to the United States for her surgery...I know that like me you have so many what if's? Please Karla know we're here for you and do email me you have my direct email, and I will try to get back to you as soon as possible!! Sending ((((((BIG HUGS)))))) your way!
Lindzy

[anr0014]

I feel the same way.... this weekend Chris and I tried to join the "normal" people. Friday night we went to dinnner with his work people, several of whom did not know the situation, they just knew he had taken some time off... maybe an extended vacation... and everyting seemed so oddly normal, except for my HUGE anxity during the dinner....

Today I spent the day at the beach with my best friend and her husband and another friend... we met up with another girl while at the beach who did not know the "situation" and all I could do is find myself talking about Jake, she is studying to be a pediatric/ob nurse and I thought that if I shared Jake's story it might help her with another family one day. I just want everyone to know Jake and know how much he means to us... I want everyone to know it is ok for them to talk about him because he is my favorite subject... I could start and end every conversation about him... It is just so hard to meet new people... But at least my best friend brought out Jake's picture and introduced him as her first nephew to everyone... that really meant a lot....