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He's Their Brother
My kids talk about Derek the way they talk about any of their other siblings. He is their brother and that’s all there is to it. I remember one time, it was probably two or three months after he died, Marshall, our oldest, had a friend over. As we were walking home from school, his friend said, “it’s too bad you don’t have a brother anymore” and Marshall got ticked. He was like “I do have a brother, he just lives in heaven.”
-Mother
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Why Can't We Just Get Another Brother?
My son will say to me “Well, why can’t we just get another brother?” That’s my son. He has three sisters, and then there was his brother. He’s pissed that his brother died, but then he’s also pissed that his brother died. You know? He’s alone; he’s got three cousins that are girls. So he’s just like “Why can’t we just get another brother?” and I’m like “Well, you know, it’s not like the fish, you can’t just got out and get another one.” I think that even as an adult you feel that way.
-Mother
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Tuck His Wings in
My niece is convinced, and it’s pretty convincing when you talk to her, that Derek comes to the house and plays on the swings. And she’ll describe what he’s wearing, what he’s doing. She told my sister “Mom, you need to tuck his wings in, they’re getting stuck in the swing.”
-Mother Top of Page
We're Gonna Be Famous
“Mommy, how’s our fundraiser?” And I said “It’s great, we’ve gotten so much money, people have been so generous.” and she’s like “Are we going to have our (child’s name) Fund?” and I said “We’re almost there!” and she goes “We’re gonna be famous!” and I started laughing. I said “No, we’re not going to be famous” and she goes, “Mommy, think about all those other babies’ families that are gonna live. We’re gonna be famous to them.” I sat back and I thought here is my 6 year old with all of her issues that she has, and she really, really wants to make these other babies better.
-Mother
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I Use the Word "Dead"
I had to do a lot of explaining to my son and still do. Although he was only two and a half years old, he still understood what was going on. He knew that he had a sister and then all of a sudden he didn’t. To explain that to him was a huge thing for both of us, my husband and me both. We got a packet of resource materials from the hospital when we left and we did get a list of books to help us. Unfortunately, none of them were geared towards anything younger than the age of five. I looked through a lot of books, searching for things that I could bring down to his level. When I spoke to my son about Libby dying I didn’t say “She passed away,” “She fell asleep,” “She got sick,” or “We lost her.” I used the word “dead” and “she died.” A lot of the books were not as direct. We chose to be direct because we didn’t want him to worry about falling asleep and not waking up, or worry about getting lost and never coming back, or worry about getting sick and then dying. So, we were very careful explaining it to him in our terms the way we wanted to explain it. I found that we really didn’t have much to go on so I ended up writing my own little book for my son explaining it to him in what I thought were terms that were direct.
-Mother
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He Knows He Had a Sister
We chose to make sure that our son knows that he had a sister. In fact, two days after she died, I wrote him a letter I will hopefully give to him, I just don’t know at what age. I wrote to him about his relationship with his sister and what I saw them as, and how he interacted with her and what he liked to help me do with her. Little things about the way they played together, mannerisms and stuff like that I don’t forget. I make sure he knows how he was with her. Reassuring them that you are going to be there for them without lying is important, because a lot of his concerns are that he is worried that he is going to die as well, or that I’m going to die or my husband’s going to die. As far as suggestions for parents, don’t lie to your other children, but try to reassure them that barring any unforeseen circumstances you’ll all be together still.
-Mother
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The Bridge Between Her Two Sisters
She’s the middle child. She has a younger sister and an older sister. My husband and I, when we let ourselves go there, sometimes like to think that she would be the bridge between her two sisters. Her sisters are very close but we think the role she would have played in their lives would have been as a mediator. Having her two siblings are a Godsend to us as it helps mitigate the pain of not having her with us physically. The presence of her siblings is so important on many levels. They are also a reminder in an inevitable way that there is a daughter missing. We do wonder what it would be like to have three girls sitting in the back seat, or three girls standing in front of us, or three girls rough housing.
-Mother
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Have You Said Everything You Need to Say to Her?
The last three days of our daughter’s life we had a huge amount of family in the house surrounding our four year old and supporting us, and she went out of the house most of the time. The last two days she never went into our dying daughter’s room until the last day of her life she stopped breathing for extended periods of time and then she’d start breathing again. My husband and I kept asking ourselves why she won’t let herself go. I asked my husband “Have you said everything you need to say to her? I’ve said everything I needed to say to her.” That evening our four-year old came into her room for the first time in two or three days. She had been completely ignoring her sister. She came into her room and gave her a kiss and said “I love you” and then she died twenty or thirty minutes later. We think that she was just waiting to hear from her sister. My daughter loves that story. We tell her that story all the time now.
-Mother
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The Missing Sibling in Her Artwork
It has been interesting to watch how our daughter draws her family because when her sister had first died she always put her somewhere in the picture. Over time, I think in third grade, she did a couple of pictures where she didn’t figure at all. There was no baby floating in the sky, no baby as the sun, no baby anywhere. I remember last year she told me about how she drew a picture without her sister in it and she wanted to know if that was ok. I assured her that it was ok but inside I was momentarily sad that that was where she was developmentally. It’s all good. It’s all healthy. Whatever she’s doing is what she’s doing.
-Mother
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He Wasn't a Burden
We had a daughter at home that was just turning three the week he was born, so that was really hard to be away from her. We had my parents and my husband’s parents and friends all coming and taking turns with her. They would stay with her all week and we would bring her down to Boston on the weekends. Our social worker was great in helping us find some hotels in the area that had a pool and other things that made it fun for her to come down and not feel like he was this burden that took us away from her all of a sudden. So she was able to come down and see him a little bit.
-Mother
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Being Honest With Her
It was so painful to come home. We came home late at night and I remember her coming in the room in the morning wondering why we were home. We just told her flat out. They were good at the hospital telling us to just be honest with her and don’t be afraid to use the word “dead” and that his heart didn’t work anymore. We really explained it. She had just turned three and she took it very well. She completely seemed to understand. The hardest part was that she wanted to play it out for a few weeks just to understand. She wanted me to be the patient, to be her newborn brother. She wanted to put plastic on my heart because she thought he had plastic there. She wanted to pretend that she was the doctor and that I died. It was very hard for me being in that position to have to go through that but knowing that she had to talk about it and play it out for her. I was always kind of balancing my own need to breathe and be sorry and also to let her go through it the way she needed to.
-Mother
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How Many Brothers Do I Have?
She will quiz her friends now. We have a new one year old. He was born healthy and everything’s going well. She’ll quiz her friends when they come over and she’ll say “How many brothers do I have?” then she’ll say “Nope, I don’t have one. I have two!”
-Mother
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The Gift She Gave to Her Sisters
She was also a gift to us in the way that she impacted her sisters. Siblings who are dealing with a child like this have to make amazing adjustments to their own lives. We as a family had to make adjustments. We couldn’t do the things that “normal” families could do. There are things we had to give up and we did because that’s what we had to do and we wouldn’t have it any other way. Just appreciating how our girls responded to that by not complaining and by it just becoming our normal way of life as a family. They’ve accepted that and I hope they have become more caring individuals and more understanding of people who are different. It is really a gift to us to see our girls developing like that.
-Mother
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Taking the Role of Parents
Father: Our kids, after our daughter died, took over the role of parents for us. They were protecting us rather than going through their own grief. How do you help your remaining children to grieve too when they’re concerned for their parents?
Mother: They were parenting us. We could see that they were doing it and we couldn’t do anything about it.
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We Don't Realize What They're Thinking
The March before last, my sister’s dog died, and he asked me “Did Aunt Reese flush Brownie down the toilet?” That’s what we had done with his frog when his frog died. And it wasn’t until then that we realized that he thought we flushed Libby down the toilet. We laugh about it but it’s really not that funny that he would think that we would flush his sister down the toilet but we don’t realize what they’re thinking. Those things come out and it’s like, I guess we’re ready to explain the next couple things. He was two when it happened and now he’s eight years old, so his intellectual ability gets to that point and he starts thinking about and comes out with the questions. When he comes up with something like that now he’s ready to listen to where her actually body is. So yeah, it’s been a process. He comes up with questions like that all the time so we’ll be explaining this for a while. It’s hard when you don’t know yourself. When your son says “Mommy, what does a soul look like?” and tells me his soul is rainbow colored. I don’t know where he comes up with that stuff.
-Mother
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Don't Lie to Them
I would suggest using correct English when you’re talking to your kids about a sibling dying or anybody dying. Also, involving them in the process as much as you feel they can handle it without damaging their psyche. Also, not hiding it and acting like it never existed. We chose to make sure that he knows that he had a sister. In fact, two days after she died, I wrote him a letter. I will hopefully give it to him, I just don’t know at what age. I wrote to him about his relationship with his sister and what I saw them as and how he interacted with her and what he liked to help me do with her, little things about the way they played together, mannerisms and stuff like that do I don’t forget. I make sure he knows how he was with her. Reassuring them that you’re going to be there for them without lying, a lot of it was he’s worried that he’s going to die or I’m going to die or my husband’s going to die. As far as suggestions for parents, don’t lie to them, but try to reassure them that barring any unforeseen circumstances you’ll all be together still.
-Mother
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Her Place is Elsewhere
When her sister was five, she became quite curious and obsessed with the body, what had happened to the body, and where Cameron was... We explained that the body wasn’t Cameron's anymore; her spirit had gone to heaven. When she was five, she would say things like a shooting star was a unicorn coming to pick her up to bring her to heaven so she could hang out with Cameron. She also said she wishes Cameron would come down and go back up. My six-year old, who never knew her sister but hears about her all the time, she also will speak of Cameron and wish that Cameron would come down. Neither of them ever frames it as though they wish Cameron would come back for good. I think they understand that Cameron’s place is not physically in the family but it is elsewhere. They would like to chat with her from time to time.
-Mother
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His Sister Was Really Upset
His sister was two and a half when he was born, and just adored him. When he died, there was so much going on; the house got really busy for about a week or so, and I don’t think that for her anything seemed to really register about what had happened. She saw people crying but I don’t think it really registered. I think about a month or two after his death she really started to ask a lot more questions. She would ask, “Where is he?", "I miss him", "Is he still in the hospital?” We would explain “No, he’s not, he died” and for her that was enough at the time. As two months passed the questions got more intense, and then by the time she was three and a half or so, the questions about “Where is he?”, “Why can’t he come back?”, “I miss him” got more intense. She would get very emotionally upset, crying, especially before bedtime, or just anytime, just upset about where he was.
Having pictures was helpful. I think it was really helpful for her to see a family photo of the 4 of us together and other pictures because the photos gave her something more concrete to talk about. We also did drawings; we would draw together and she would talk about him, “Oh, lets draw a picture of my brother what we did together.” We would do drawings of things together over this whole process.
-Mother
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When People Ask "How Many Children Do You Have?"
I don’t know how to address people when they ask how many kids I have. I always say I have two, but then they ask, “How old are they?” I feel the need to tell them that Andy passed. He would have been 20. I don’t always want to have to tell people that.
-Mother
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Her Sister and Brother Got Angry
It was very hard for my two older kids to talk about her. It was really difficult for them at first. They did not want to talk about how she died. They did not want to hear about her. They went to see a therapist and went through the process of talking about their feelings. The children, especially my daughter, did not want anyone to bring her up unless she brought her up. She would discontinue talking about her sister if someone started talking about her. My son, on the other hand, wanted to talk about her and tell people what she did. Initially, he did not because of all the pain. He demonstrated his pain with his behavior. He started to act out and become more afraid. My daughter became outwardly and inwardly angry. She would even get angrier if they people brought her sister up.
-Mother
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