i know there are many of you who have lost infants and we are going to be talking to some people today about those losses and recovery we're going to give you some really good information and advice from those people who've been there and not pretty quiet things i'm glad we're going to be hearing from people about absolutely so we're going to talk today with valerie samuels and the colston valerie only call and valerie is the founder of a mother's heart ministry and she is a member of the compassionate france and she has written a book which we have right here wow always my twin yes and this is an on our of her daughter gina who died at nine days old and it was it's written for her twin is well i don't want me to interrupt you but she's got one piece on there about her husband in a marathon that i absolutely love so you should go to open to help and look up in the cold and read that because it's a beautiful piece it is it is a beautiful piece in honor of their daughter sky way back we've been friends for many many years we st met in my class a clumpy when she was my student and then we ended up just collaborating in working together and at that time she was running the sky foundation in honor of her daughter today she is the founder of ok to grieve and she is an open to hope writer and she has done a lot of keynoting in speaking and work in the field of grief and loss and built a lot of awareness for infant loss now these guys are from different places you're not she's from new york because from new york and i'm originally from new york but i've been the charlotte area now charlotte north carolina charlotte north carolina subtle awesome to have you come and be on the show and great to have you on again nicole and i think that's one thing i want to mention to heidi is we've done another show you and people are going to want to watch that one too because she's yes this is not nicole's st time on our show so please tune in and see what else she's done and i want to know i know that nicole you approached me and said you know i just i know somebody named valerie who  very involved in this work and would be interested in being on the show and i said ok can you guys come in together how did you originally meet that is a great question heidi i had the pleasure of well it's so funny i don't even think barry knows this but it was back in two thousand and six and i was it was not long after sky's death and i was looking and seeking ways to cope and one of those ways was i wanted to go to a conference about pregnancy loss and it was the plight really excited to go because not only was she speaking about her experience with infant loss but she was a person of color and i hadn't really seen anybody do that so she didn't know but i was really motivated to come so i flew out on my own area again not seeing speakers or even literature which pretty much is one of the reasons why i wrote my book you know just to tell me more about that piece so i mean i agree with you it's so important to see people of diversity that represent our country and i you know like we calls it someone that actually looks like me how how does that change the way that you does it does it how does it impact the way that you grieve and the way that you find hope again yeah sure no problem well i feel like culturally a lot of times at least the message that i was receiving is that you know fine this happened was said this happened but you've got to just kind of tack this up and move on and that was not working for me and i didn't quite understand why i had to do that didn't make sense and that's why i think when i met about valerie we were talking and it's like she got it she got what i was saying and we were both very i felt we were vigilant a about listen it's ok to grieve this loss it's a significant loss and absolutely and and i thought very similarly when during that st conference with the literature that was there lots of wonderful  family and it seems like even though it reflects my family but people who have used it to help them through their last throughout all these years it really has not matter everyone seems to can relate to this story so i'm glad that i didn't feel like i needed to make it you know something about ducks or something you know play safe that way i actually larry let me put my family and i  well yeah well i'm watching you guys and i know i think our audience to think and i'm thinking tell us some of the things that you're telling people i mean these that you've been speaking and talking and what are you telling of diverse backgrounds and it's pretty well known that african american women are more than twice as likely to experience important point african american women are twice as likely to experience an early whose experience or birth outcomes and particularly from diverse backgrounds so in working with families really being present listening and not making people feel like they cannot agree just because culturally maybe that has been the message that has been given to you when we call the corner that we're together i supervisor at one point years ago and she taught me so much because one thing that i really learned from you is you can sit back when somebody is grieving early infant losses or any kind of loss and say what would you like me to do you need to give them ideas because you know you're so overwhelmed and you call has gone in and been like the st person in after these early losses where women were still in the hospital and said ok let's get some ritual let's get footprints let's get you know she's made boxes for them to bring home she's taking pictures things that you can't go back and do if you don't do i'm really on and you gave them these ideas and and without you they would have had no idea even that that was an option so so tell our audience about this they can do boxes tell give us some ideas of what people can do right now well in the hospital many hospitals do  offer memory boxes to families who have experienced death of a baby so there's the memory boxes that many hospitals will offer pictures and even if the family does not want to take pictures at the time sometimes the  group that's doing it you know maybe the nurses they'll hold the pictures for them out of different you know maybe they'll take them at a later time and there's you can excuse me can dress the baby you know maybe bring in clothes that you were going to take the baby home which we have today and they are just so cute and they're so important and it's interesting the hold the whole twin loss situation because i keep noted at twin the twins this year  yeah that bond is so strong it's there and i talk to siblings that have lost their twins early on the twin they're like you know i think a part of us is missing right when you know because that bond is too strong absolutely i remember early on after i'm gina passed away and i did a lot of reading a lot of research about twin loss and i found out about this one organization and one thing i read was that twins were lost their twins very early on if the information about their twin was hidden that there was a lot of anger later because no one told them so that really helped me to come out the forefront to make sure my daughter would know that she was a point she was born with the twenty same thing for our surviving children and also what helped me as i have helped other families over the years when there's a twin loss to help them take a picture together with both twins that's so important to us i didn't have that opportunity no one suggested it to take a picture with both of my girls i didn't get to hold them together and i just no one thought of that and as a bereaved mom i'm new to this i never thought of it so to be able to talk to another mom and say you know trust me you will be so glad you do this and they have now what's coming up for me right now is if somebody is watching those and for you you know called who i haven't done this i'm like you were what i happened got into the hospital didn't take the pictures you know i haven't got what you guys are talking about how did you cope with the and what do you suggest how did you deal with what do you suggest that people could have could do now right and you to know call and you want to start valerie i will what the one of the st things i did was i had an artist of my girls separately and put them together yes and i plan to do another one in the future to include myself holding them so you know it makes them very small to be but it's so meaningful to have those types of pictures and memories and the thing is to spend time with that child as well because you're torn you know you have a living baby and one that passes and medics harm so minimize people kind of think you should focus more on the children your child your twin to survive this resonates with the call while you didn't have twins after sky you had autumn yes and it was two or three years later about two years and my thought is that people maybe didn't say this to you i don't know if they did but ok well at least you could get pregnant now will at least you know how another daughter and like you're saying barry that doesn't replace the daughters that you lost some so rightly is another different daughter exactly i say that and fact someone that i interviewed and spoke with before another bereaved parents said i only have one of this child because there's only one sky and only one gina so they don't replace children but i think that people just society it's just easier to say well  things that obviously you feel passionate about a cause i assume you didn't get some of the things you would have liked to have had correct well right so i remember there was one in eleven of the cases that i had they didn't get the pictures and you know they weren't able to you know have the family come in things like that i suggest again like valerie did you know having a photo done you know trip having what you can do is like if there is a nursery available that's what i did i had some pictures taken of the nursery trying to kind of recreate the stage of different things that had meaning you know that we had a lock of her hair some things we didn't get because you know we didn't get to see her dress to be to certain things we think it to do so you know there's a time there was felt like there was a time limit sometimes with families how long you can hold the baby or be with the baby which i don't quite understand but y crisis and not everyone wants to do it let's face it we're here talking about the moms what does the dad want you know what do people want you've got a whole family situation do you have any suggestions or thoughts about dads including dad making sure you're talking to dad a lot of times all of the attention is focused on the mom and that's understandable i mean she is going through a lot but that is too and sometimes can feel a little bit isolating or isolated because relationship the they didn't happen with the baby and and i think five times i think and i think that is also minimized and i think that both of you knew your daughters for nine months i mean you got to bond with them and you got to know that i mean you know our bodies you can feel them and all that and it's interesting because people don't realize that you didn't have a relationship for nine months before before they were born right i'd also remember learning very early on thankfully that men sometimes grieve every differently yeah so when i saw that my husband time it helped me not to get so caught up in what he did or did not do that he has his grief that i have to mimic mine and so i try to take full advantage of what i was feeling and the things i want to do whether i will support groups or talk to friends if that works for me that was fine if he did not do that that was five too but i also believe that their grief is minimized now many times and also they need to dads three dad say we want to fix it you know we don't want to deal we can't we can't fix it we can't do anything on our own our wives are recovering you know and they don't have a baby to recover i mean so it's like could be you know who it's two things going on y support group and and that comes up a lot the day adds you know moms or grieving and you know trying to take into account how dad is doing and sometimes deadly different page and and that could cause stress and too know when you're the middle of the raw pain many times you know you don't always have the tolerance to try to figure out what's going on with the spouse you know you just want something done you want comfort and sometimes that's hard for them to  you know a couple of weeks out or whatever they're feeling physically better but they still can't get out of bed how did you do it right i'd say give yourself permission to set boundaries because a lot of times that's the time when that pain in the initial stages of grief you have a lot of people coming over a lot of times and well let's do this and or maybe they are inviting you out trying to just help you you know with good intentions but sometimes it's just too much and it takes a lot of energy to even just have to pull over sometimes to to to do whatever you know or just in because you feel like you've got to be  need water just maybe setting some boundaries and saying you know this is just not a good time but i really appreciate it maybe you can just leave the soup at the door and that's ok right and for me i loved going to support groups  very early on my church had one of the time it probably wasn't even a month after gina died and so i was able to emote a lot and cry and i felt so much better afterwards but even up until now i know it's been seventeen years i still will go to a support group you're people don't realize is that when you've lost your children and your brother you've lost the future you thought you were going to have right so things not beginning and ending we keep revisiting the losses as we go through and so i wonder and i'm wondering about you or your daughter or your other twin giulio does she talk about her twenty or does she bring her up or well you know she's known about her twin  life and i made sure that she did you know the necklace we built for their pictures we did a lot of work in our ministry organizing walks memory walks and meetings and whatnot so she participated in balloon releases and all types of what it means and i know what it means so that works for her you know i like what you're seeing the parents are surviving you know don't and i always wanted to be at a place where one day maybe when she's a little older if she does feel like she feels the gravity of her loss to that i can be there for her with the healing that i've been doing over the years so i got you ready nicole how do  questions we've had pictures and it's always been an open book so you know it's not something that is going we've said we're not going to hide from a lot of that's right and also i just want to add to with birth and this comes up a lot in the  groups and specific parents of twins twins what do you do when the birthdays many of us and not all but many of us will still do to birthday cakes or went to a birthday cake both things as julia got older i let her decide so there were years when she wanted both names on and then there were years where we had a cupcake for gina and she had a cake so letting her be involved in that you know was a very helpful but i do find a lot of parents kind of struggle because it's a hard time anyway what do we do you know how doesn't become twins because one passed away if there's two surviving same thing with the twin that's passed and my daughter is still twenty and always so when people make comments where it's singular for her and i mean they don't they don't have to say anything but if they do and kind of discount the fact that she came in with a sister you know that could be pain it is very painful to say to parents especially newly bereaved very very aware that they were two children and when people minimize that  it's very hurtful and i'm watching the show and i'm seeing you two guys are listening to and i'm thinking these people are really put together ok give me some tips oh how i can do it and one of the things that i'm hearing and i wan say this and i think heidi and i have noticed quite a bit that when people do service you were talking about going to compassionate friends all these years there is more to that it's not just for you it's also making meaning out of the loss we're getting in those areas when you're ready to move out when you're ready to do something so i want to know if you've got a couple thoughts for the people about how you got where you are both of you well yes and that's a very good point gloria because being put together right now i think i'm sure i can speak for both of us it was not like that early on you know you're just a wreck most people are so your question i'm sorry you have given such a couple of quick tips who are close the show on what i can do to get where you are well i can tell you what works for me and that was my faith in god that helped tremendously when i explain last year that i went on a partial fast really to kind of just find out my next steps and really kind of closed i didn't close the world out just because of my grief but just to try to hear from god what it is he wanted me to do right you have got you and i'm going to use those last  you've written a book i think that's part of your reaching out yes i love you because we talk to people about journaling writing love you doing it tell people where you they can get your book on it's available on amazon dot com it's also available on trafford dot com and and as far as some have some tips for me talking i love to share about her and also talking with people who can relate you know if your family doesn't get it talk to people who can't go to what meeting  don't need enough hope to get through the day you don't need enough hope to get through a year you just need enough hope to get through the next moment even though we had this thing happen to us it also happened for us we hold the memories of those that we cared for that were a part in the making of our characters and when they pass those memories will come back when you need them they become voices of intuition and of guidance we want to be a lifeline for somebody else we want to inspire others