I have been fortunate to have three remarkable friends in my life who happen to be moms and happen to share a similar and unfathomable experience in motherhood. All three have lost a child.

It has always seemed so strange to me that I know three women who have endured the experience that no mother believes she could endure. I would get bits and pieces of their experiences in conversations, and somehow the three, even though they had never met, were linked in my mind. All three shared pieces of their stories over the years, many that I will never forget and all of which have taught me something about strength, love, and survival, especially when it comes to mothers. So one day in August 2005, I invited them all over, introduced them to each other, and they shared their stories with me and with one another. The experience and the sharing was quite frankly mind blowing, and they've agreed to let me share it with you.

Here is my conversation with Nicole (30), my friend and cousin, who lost her daughter Rosie (2) in 2004 from complications with a rare disorder called infantile spasms, Monique (36), my friend who lost her son Gabriel (9 months) in 2001 to a rare genetic disorder called Krabbes disease, and my friend Debbie (39), who lost her daughter Abigail (2.5) in 1994 in an accidental drowning. Nicole is married to George, Rosie's father, and is now also mom to Claire (1). Monique divorced Gabriel's father Richard and is now married to Loren. Debbie had Amelia (9) and soon after divorced Abigail and Amelia's father Keith and is now married to Jim, with whom she has Lily (2.5) and Daniel (11 months).
-Sheri

Sheri: I always had this weird connection, all three of you having this experience, but it was really weird because when Rosie passed away, Debbie wasn't working with me anymore, and I hadn't seen Monique in awhile, yet I got an email from Monique and a phone call from Debbie. They had seen the obituary, and I was thinking, "How random is that?"

Debbie: Nicole, you were pregnant with Rosie when Sheri and I were pregnant. So I felt like we all had [our kids] at the same time and when it hit the paper, I was just…

Sheri: I know and it was just so random. Maybe you read the paper every day, but they both saw it that day and called me. [Losing Rosie] was so devastating to our family, and just to get those calls, I was thinking, "What a weird connection." There's this strange connection even if you guys have never met each other. And through me, I guess, we'll try to tie these stories together a little bit. So who wants to start and tell their story? Who's the brave soul?

Debbie: I'll start because mine's probably been the longest. I lost a little girl. Her name was Abigail, long before "Abigail" was ever popular, and she would've been 14 this last July. So it's been 11 years. She drowned in my parents' pool underneath all of our noses. Her dad [Keith] was working. Even more complicated, my husband and I just moved home after living on the east coast, and we came back to our house. Our renters weren't moving out for a couple weeks, so we were staying at my parents' house where they had the pool. Keith was at work. I was at home with my parents, and we had just come home from dinner, and I was working with my mom inside the house. My dad was working outside on the patio.

Abigail was just a really strong-willed, tenacious little girl that decided that she was going to go swimming. You know, she was almost three. She was two years, 10 months. I really had almost a trust that she knew better because she had had two years of swim lessons. She took a little plastic table and a chair and climbed a fence that was taller than her, landed naked on the other side, and went into the spa. She must have fallen in cause I don't know if she could've touched, but it was underneath all of our noses, and I went out and [asked], "Where's Abigail?" and my dad saw the things stacked and found her at the bottom of the spa. He has emergency training, so he knew how to do CPR, but she was never revived. But it had been minutes. It happened so quickly under all of our noses. It just happened… That's what happened. So she died the day after Mother's Day, which just sucks for Mother's Day.

So then, Keith and I moved back into our house, and we had Amelia. We conceived Amelia, I think, probably the weekend of Abigail's first anniversary of her death. We had been doing all kinds of fertility treatments to try to have her because we were so desperate to have another baby, and we really should have probably spent more time in the grieving process instead of trying to have another baby. February 17th, a year and a half later, Amelia was born. It was just completely terrifying and overwhelming. By that following February, when Amelia was a year, Keith and I were separated and divorced the following March—by the time Amelia was two years old.

So when Amelia was almost five, I met Jim, and we got married, and we have two little ones, Lily, who is two and a half, almost three, and Daniel, who is ten months. So it's been a journey. It's been a lot of change.

Sheri: Did you want to talk now, Monique?

Monique: Sure. My son's name was Gabriel, and he was born in 2000. I had a normal delivery, a Caesarean section that I was kind of disappointed about, but other than that everything was fine. He had perfect Apgar, seemed totally normal. He was my first child. I didn't really know what to look for. He probably started having symptoms at about two and a half months maybe, but I didn't really become aware of it at least until about three months. He stopped being able to breastfeed, started being very irritable and crying a lot, a kind of high-pitched cry, and he would have little tremors. His foot would [seize up], and I would think, "Gosh, how weird is that? Is that a seizure or something?" I didn't really know.

We had moved across the country when he was a month old, so I was isolated, and we were in Nashville. We didn't have any family there. I remember telling my family on the phone, "I don't know. All the sudden he's crying all the time. He's having a hard time breastfeeding." They were trying to be supportive on the phone. He hadn't smiled yet. That was another thing. He was very serene. When he wasn't crying, he was just very serene.

So I had come out here [to Sacramento] to visit my family, a planned trip. I was still on maternity leave from my old job, so I still had an appointment for him, his four-month appointment. I'd taken him to the doctor in Nashville, and they didn't seem to think anything was wrong. I went into his four-month appointment, and the doctor immediately…at this point exponentially his symptoms started to increase. He was arching a lot. When you would lay him down, he would really arch a lot, and he was losing control of his head, and he would have these sudden gripping muscle spasms where his whole body would contract, and the doctor immediately said, "You know, my first impression is that it's autism or cerebral palsy, but I want to send you to a pediatric neurologist." And that afternoon, I was just supposed to be going to this prenatal yoga reunion with my mom [friends] who had had babies at the same time. It just all came up on me so fast. I just remember calling them and saying, "I can't come, you know, there's something wrong with Gabriel. We don't know what."

We went to the pediatric neurologist, and she luckily, thank God, she was just so right on it, knew immediately, had her suspicions of what it was, and it did turn out to be a genetic disorder called Krabbes disease. There's no cure for it at this point, unless detected prenatally, and then there is a 50 percent chance of survival with a cord blood transplant, but most babies die before they're a year old. There are some children that are living with the disorder that are maybe four years old, but most babies die before their first birthday or around their first birthday. And that's what happened.

For me, it was really helpful that [the doctor] was very frank and didn't give us any kind of false hope and was just like, "Basically he's going to melt down over the course of the next year and lose more and more function and lose more movement and that sort of thing." They put us in touch with this group called Comfort for Kids, a hospice organization for children, which was so wonderful and so helpful. [Gabriel] had physical therapy, and [a counselor and a chaplain] came to the house.

[Gabriel] died when he was nine and a half months old. It was a week after 9/11, which was so surreal. The whole thing was surreal anyway. He was at home. We never had to hospitalize him. We kind of chose not to too. There's a lot of variation in the way people react, and we chose to just keep him comfortable and keep him at home instead of [opting for] all kinds of interventions that people do even though it doesn't really prolong things for more than a couple of months.

So that was in 2001 and then Richard and I separated a year later and eventually divorced as well. We were kind of in turmoil before all this happened. We'd been together for several years, but we got married because I was pregnant and it was all just such a shock. And we really tried after that. I mean it took awhile for things to totally disintegrate. I was remarried in January.

Nicole:I guess that leaves me. [long pause]

Sheri:Nicole was just saying that her and George were talking about this all morning.

Debbie:It's hard to just let it come out.

Nicole:Okay, so Rosie was born in June of 2002, and she was our first. My husband and I had been married for two years but have been together now for ten years. So we were together for quite awhile before we got married, and we had Rosie. At the time, we were living with my grandmother. She fell and broke her hip two months before Rosie was due, so my husband and I decided to move in to help her rehabilitate. At the time, [my grandmother] was 90 years old. She needed some care.

So Rosie was born in June, and [it was a] normal birth. I had a Caesarean as well. She was breech, but there were no complications whatsoever at birth. Pregnancy was fine. I did have gestational diabetes, but that seems to be unrelated to what she had. She seemed to be developing fine, but [I was a] first-time mother as well. I think in the back of my head I always knew there was something going on. By her four-month appointment, she hadn't rolled over, and she was not reaching for toys. She did smile. She'd coo. Muscle coordination was not there, and she had pretty, low muscle tone for sure. At her four-month appointment, the doctor felt that she was still in [the normal] range, just on the slower end of development. He didn't see anything that we needed to worry about.

So we went ahead with that thought, that she was kind of slow at developing and kind of waited, and then at five and a half months, we moved into our new home, and one week after moving in, she started having what we were later to find out were seizures. They're called infantile spasms, and they just look like muscle spasms basically. When I first saw it, I didn't know what it was. It was just like these strange little motions. It went on for about two minutes. Repetitive muscle spasms is what it looks like. That was on a Sunday or a Monday. The next day she did it again, and I told my father-in-law about it. I can't remember if he saw them or not, but I was telling him about it, and he was like, "I think you should call a doctor. That doesn't sound like anything I've ever heard of."

I think that evening before I called the doctor, I saw her do it again, and she was crying, and what stood out to me is that her crying would stop when she would have it. So definitely, I thought, [it was] some sort of interruption brainwise, so I started to get a little more worried, and I called the doctor, and he said, "Bring her in the morning." And we got a videotape of it and brought that in. He already had us an appointment for the neurologist just based on my phone conversation with him, but he said, "I don't know what it is, but it could very well be seizures, or it could very well be just muscle spasms." So we saw a neurologist the next day, and he definitely identified that it was infantile spasms.

Unfortunately, infantile spasms are one of the toughest forms of childhood epilepsies to treat. They're just resistant to medications, and Rosie fell into that category. Nothing worked for her, and slowly she began losing her development, and that affected eating. She couldn't eat normally anymore. Her muscle tone became so weak that whenever she swallowed food or liquid, it would get into her lungs. She came down with aspiration pneumonia. She had a lot of hospitalizations. We had to start feeding her through a feeding tube. We'd gotten therapy, right when she was diagnosed, early intervention, but she was just unable to progress cause she was constantly having seizures.

We took her to Detroit when she was about a year old. We were hoping to find a doctor who could perform surgery to try to stop the seizures, and the doctor there, he was one of the best in PET scans, a particular brain scan that focalizes the seizures, but her seizures came from all over the brain, so surgery was not an option for her.

We just continued to try medications. We just went from one drug to the next to try to find something, and we even tried a special diet, and that didn't work either. Through the months, it was about fifteen months total before she passed away, her health just kept declining, and she even had some leg fractures because her bones became so weak because they weren't used like a normal child, and they weren't strong enough. Even during physical therapy, she fractured a leg.

Then the January before she died, she went into the hospital because she was having seizures every couple minutes all day long. She was just continually having seizures, and we had taken her to the hospital and tried some other medications, tried Phenobarbital, which was the last drug that we wanted to try. The doctor talked about putting her into a coma, a Phenobarbital coma. Sometimes it helps to stop the seizures. Then [they] pull them back out of the coma and see if that helps. We had decided not to do that. It was just too scary. So she came out of the hospital on new medication and was doing a little bit better, and then she just went downhill from there.

One morning I was taking a nap with her, lying next to her, and I woke up and I looked at her, and she was gray, really light and gray [Nicole cries as she talks]. So I called my husband home, and we took her to the doctor, and he felt that Rosie was dying. He asked us, "What do you want to do? You can put her in a hospital and try to save her. We could try. Or you can take her home." But we knew at that point that Rosie was never going to have any quality of life. So we made the decision to take her home. She'd already been on morphine for a few months, little doses of it because she was in such pain. We took her home, and we were given instructions. We had to give her morphine because she was in such pain. We had nurses too. By then we had started to get some help.

Her pediatrician actually came over the next day, and the family was there, and everyone was there. He thankfully did the administering of medications, and then she passed away the day before Easter. So that was last year.

I was pregnant. I was four months pregnant when she passed away, and I know for a fact that's the only thing that kept my husband going. So it was a blessing that I was pregnant. Claire was born in September, and it was scary for us because we were constantly looking for the seizures, but I'm glad she's healthy and beautiful and doing great. Started walking already. At nine months. Things are looking good. Claire saved us for sure.

Sheri: Nicole, you were pregnant, but none of you had other children at the time when you lost your child. Tell me how that is to have the title of mother almost revoked. All the sudden, you don't have this child to help label you as a mother. What is that like?

Monique: I think, for me, it all happened so quickly. And also having him changed me so completely. [Gabriel] came at a time in my life when I wasn't planning on that, and then after I gave in and decided this is where I was headed, I went through the rest of my pregnancy terrified that I would have a miscarriage or that something would happen. It just changed me so completely, and then he's born and there's this really short period where I think he's normal, and it was so fast.

From the time he was diagnosed to the time that he died, it was about five months. I don't know, I couldn't take the carseat out of the car, and I would have, even for the next couple of years, just this feeling. As a single person or a person without children, you have all this unstructured time. You just do whatever you want. You can daydream… So after [Gabriel died], I would find myself in the midst of doing something like that, shopping or [whatever] and I would just be stricken with this feeling like I had left him somewhere or I had forgotten him. Or "Oh my God, how can I be doing this right now?" It would really take me a minute to reorient myself and [remember] he's not here. He's not around anymore.

And I still have dreams that I have left him somewhere, that I have forgotten about him, and there will be this pervasive feeling, "How could I have just been going on?" For me, that was it as well as feeling somehow guilty that you didn't die yourself or that you're somehow able to keep walking around, getting up, doing your day. And having some weird alien feeling that you're still able to breathe.

For me, people's reaction were just always [hard to deal with], especially not having other children because he was [my only child] this far. He had a genetic disorder. He was born that way. That's him. I accepted him for who he was, and even though I appreciated people's sadness about it for me or their discomfort, I always felt like, "This is my life." I mean, it's hard, and I'm not saying that it's not horrible and hard, but this is all I have. You know what I mean? I just could never really convey that to people. Their discomfort was always so much more painful for me than my own—in a way—the fact that they just look at you like, "God how can that happen?" And really all I want to do is be able to talk about my son, who was a real person, and not just this symbolic event. You know, I want to be able to put my two cents in like the rest of the moms and not feel like it stops the conversation.

And now that more time has passed, I walk through the world as a childless person. It's strange to be a "mom" without a child. I have found it difficult to hold onto my mother identity, externally anyway.

Debbie: I know for me, it's just so weird to be a mom one day with a child and then go home alone. I just remember talking about it all the time to anybody who would listen. At work, there were so many new moms at the same time or people that were just having babies, and I felt like, "Goddamn it, I have two years, ten months experience. You're going to hear me."

Monique: Exactly.

Debbie: And so, I would talk about [Abigail] like she was next to me, and I didn't care if people were uncomfortable because I was not going to dishonor her by pushing her away. It took me a lot of years to just not say, "Hi, my name's Debbie. I had a child die" because you also have this tattoo on your head that [says], "I let my child die."

Now it's [been] eleven years, and I have finally stopped saying, "I have four children." I selectively tell people about Abigail. For my daughter Amelia, the best thing to happen to her was for Lily to be born because she just needed a sister to be alive. She never knew her, but Abigail was just such a presence in our house, and she would always ask about her. "What was Abigail's favorite color?" She talked about her every day until Lily was born. Yeah, it's hard. You just feel like your wings have been stripped.

Sheri: How did you deal with your loss and grief in the days/weeks after your child died? Was there anything/anyone that gave you comfort or temporary relief?

Nicole: When Rosie passed away, George and I talked a lot. Constantly. So I'd say we were each other's greatest support system probably. For me personally, I guess my greatest area of support was the Internet. I guess it's easier for me to talk to people, maybe it's just people that I don't know. It's easier. People going through the same thing.

Actually there are not a lot of children who have died from infantile spasms. Many of them are severely retarded, really handicapped with lots of problems. Rosie just fell into a small percentage who just declined so quickly. The seizures were so bad it ended up taking her life.

Talking to other families who were going through what I was going through was really helpful for me. I felt like I was helping, and I still feel to this day that it's therapy for me as I get on a support group and add my little bits and pieces of information. I feel like I'm doing something helpful, and it helps me.

It's just a group online. Yahoo Groups, infantile spasms. We post messages. The [group] is five, six, seven hundred members, so there are so many messages a day.

Monique: Yeah, I think I really felt that sense of, even though other people are going through similar things, it just felt so unique. I couldn't find anybody that I could really relate to at the time although there were some things that did help. Richard and I went to counseling for both marriage and just talking about [our grief]. And we were really a good help for one another during that time. We had different ways of dealing with it, but this is the only other person in the world who's really going through it in the same way you are. It's your child. No one else can really relate. He was the only person who really knew even if he experienced it differently. We were joined in that way.

We went to a group called Sharing Parents for people who have lost infants or have had miscarriages. It ended up that most people in there had had a miscarriage or a stillbirth, which seemed different too, but it was helpful. But then you're in there, and for me at the time, it was overwhelming—just all of the tragedy. It was just like, "Oh my God, everyone's life is so tragic." That's how it felt to me at the time, hearing stories about people who tried to conceive for five years and went through this long [process], and it was so emotional. And then they did get pregnant and then they had a stillborn. I just felt bombarded with every horrible thing that could ever happen.

But looking back, it was helpful at least to talk to other people about it. To me, it seems like the last five years have just evaporated in a way. I've gone on and done a lot of other things, and I've changed jobs… But in myself, I'm 36 now, I still mark my time by when he was born. It seems impossible to me that that much time has gone by, and I know that's because a lot of that time has been spent just kind of in a fog—just altered somehow.

I was lucky that my job was very flexible. It helped me to go back to work right away. I took two days off and went right back to work because I had to do something. The last five months had involved constant care. He had a feeding tube and we had to crush his medication. We used a suction machine every few hours to clear his saliva. I pumped milk the whole time he was alive and gave it to him through the feeding tube. He slept with us most nights, and I took a bath with him every day. Once he was gone it all just stopped, and I couldn't stand it. I couldn't stand to just sit around and think about it all the time. I really needed to be distracted, and luckily I had a job where worked from home a lot and I set my own hours. Some mornings I just could not get up. I just couldn't get up. I would just find myself getting up at noon. For me, that had never happened before.

Someone gave me really good [advice]… The chaplain from hospice said, "Go easy on yourself." She just kept saying that, "Go easy on yourself," and I tend to be a perfectionist. I'm really hard on myself, and I just really latched onto that and tried to let that happen. And it helped me over the years to just say, "You're doing the best you can."

Sheri: What about anger? Is there anything you can verbalize about how you dealt with anger?

Monique: I think I felt robbed a lot. I don't know if it necessarily felt like anger to me, but I did feel really robbed. I don't know how else to put it other than that.

Sheri: It seems like with [Monique's and Nicole's] situations that you could get angry at a different point than when Debbie got angry, like when you found out that they had the illnesses. The timeline is set up differently. Debbie, you got it all at once, and [Monique and Nicole] got this slow preparation for this inevitable thing.

Monique: Right. Absolutely. I felt thankful for that every day. I really felt very thankful for the fact that I could prepare for it, that it didn't just happen one day. We were grieving before he died for sure. We started grieving the day we found out.

And you know, I have to say… I feel weird saying this a little bit, but I just felt that he… I know it sounds weird to talk about destiny or whatever, but I felt that he was perfect. I mean he was amazing. I was grieving the fact that I wasn't going to know him and learn from him and [get] what you learn as a parent, but I felt like he just didn't need that much time on Earth. He was just so Zen. That helped me in a way, and I still think that. And I think that about all children who die actually, that they're somehow more evolved, that they're their beautiful selves already.

Sheri: My question was about anger, but I can see my spirituality question coming in. How was your spirituality or your belief in a God of any sort changed since you've gone through this? It doesn't have to be anything typical.

Nicole: Anger, I don't think I've had a whole lot of anger. If I did, it was probably in the beginning when she was diagnosed. And again, not really anger. When it became a point where Rosie was constantly having seizures and she was in pain and I couldn't do anything to help her, then I would say I got mad because that's not fair. It's just not right for a little baby to be in pain like that, bombarded with pain over and over again. That's what her life consisted of was these seizures.

Spirituality… I think after Rosie passed, it's just reaffirmation for me. I know there's an afterlife. I'm completely convinced of that now whereas before I wasn't sure. I'm totally aware of it now, and I know she's up in heaven and there's a place and she's waiting for us.

Debbie: I remember being really angry at Abigail. After it happened, I wasn't angry at my parents, and I wasn't angry at Keith for not being there or at my dad because Abigail would have walked right past him. I was just so mad at her. "How could you do that? You had swimming? You knew better. You climbed a fence." I was just so angry at her. It wasn't until I was going through my divorce that I was like, "God, why is this happening to me?" You know, Keith was my last tie to her, and I felt so angry that I had lost Abigail and now I was losing him.

I didn't have a real spiritual background growing up, so I was just grasping, "God? Who is God? What role did he have in this? Where was he when I needed him?" So I started reading this Idiot's Guide to the Bible [all laugh]. It was kind of a born-again type of book, but it broke down [the Bible]. Then I started reading When Bad Things Happen to Good People because I just kept thinking, "God, I'm such a good person. I was a good mom and a decent wife. Why is all this bad stuff happening?" I was sort of having this awareness of "Who is God and what is his role?" And no, it wasn't God's responsibility to protect my child. I finally had an understanding of his role.

But then I became really angry because I started thinking, "Goddamn it. Where is my support when I was going through this?" And I think we all just moved on, and we never talked about it. I just wanted my mom and dad to hold me. Keith and I, I don't even remember [talking to] Keith. I mean I know we did, but a lot of it I've just sort of blocked out. I just became angry years later, and I was angry for several years. I couldn't even look at my parents. I just didn't want them to touch me because it just hurt, and they tried to reach out to me and tried to help me, but I was just so angry that Abigail had left and now Keith had left and nobody could do anything right.

But how did anger go away? I just read a ton of stuff. My husband is Catholic, and we just talk so much about God and his role. I finally, eleven years later, just have this real peace cause I was always worried that Abigail was just floating around out there alone. Abigail really loved whales, and I envisioned her swimming with whales. I was like, "God, she's alone. I hope she's not sad or alone." You know, finally I just feel like she is in a place that's better, not necessarily better because I'm not there, but just a better place [where] she's not alone and she's with other children and people that are keeping her safe. I don't know. Finally, my anger's gone, which is good.

Nicole: [When Claire was new], I had [her] next to the bed. It was in the middle of the night, and I looked over at her, and we were all snuggled up, and she started doing this thing, and it looked just like a little mini spasm. The thought of reliving that again, I mean, I consider myself to be a pretty strong person, but the thought of reliving it again, I don't see how I could do it again. For that moment, I was convinced she was having seizures, and all I could think about was just killing myself.

And it ended up being nothing. I told the pediatrician about it, and he said it was probably central nervous system stuff, just newborn little things. They do funny little things, you know?

Sheri: When Rosie first started having those seizures and you were like, "Look, she's having one," [I couldn't even see it]. It was so…

Nicole: Subtle. I got it down to her eyes dilating cause sometimes it would be just her eyes dilating. I knew she was having them. They changed form. I mean she even had grand mal seizures, so over time they really just changed form.

Debbie: I wonder. [Sheri], did you worry about Clyde dying? I mean do normal people worry about their kids dying?

Sheri: I wouldn't say major but definitely. I don't think I have any more heightened [fear] than any other [mother].

Nicole: I didn't think about it. I mean for five months of Rosie's life, I didn't think about it. I mean, yeah I put her to sleep on, what is it her stomach or back, I can't even think of it now, but you know what I mean?

[All laugh]

Debbie: Well, I don't know that I thought about it with Abigail, but I remember when Amelia was born just looking at her in the hospital just going, "Oh my God, what am I going to do with this child?" and also, "Can I love her cause she's just going to leave me?"

I had a friend in Ventura, and my phone bill was so huge. I'd call her five times a day sobbing, "I don't know what to do with her. I'm so scared she's going to die."

Monique: Well, yeah I worry about that because before this happened, I hadn't experienced depression. It was the first time I experienced that feeling of ever contemplating that you might kill yourself. Not that you would do it, but I just wanted to go where he was.

So now I do have fears in thinking about having more children. I have lost my innocence in a way. I know I'll be a different mother now. But there are a lot of fears that go along with that because I just felt so up to the task before. I think I still am, but I wonder. There's just so much else complicating it now, and I know a lot of that stuff will come up. The unknown is one thing, but now my only known experience didn't work out.

Sheri: You've all kind of voiced that you dealt with your child's death in different ways than your partner and your family did. Let's talk about that.

Debbie: I think Keith really internalized things and just wanted to be anywhere but with me. I mean that first year, I don't necessarily remember it being bad, but once Amelia was born, he was just gone, just completely emotionally away from me. That's just his personality, to just internalize things.

Monique: I think men, I mean, not to generalize, but I think Richard internalized it more too. And also people focus on the mother more for sure, I think. That was my experience anyway. Women are more nurturing to each other in a sense. I could at least talk to my friends about it.

Debbie: [Men] just don't go talking about it.

Monique: Especially something like that. There were men in the Sharing Parents group; it was all couples in there. That was helpful definitely for the men to have another man to talk to about it.

Debbie: And I wonder now. I wonder if Keith's talks to his new wife about it. After Amelia was born, he developed this friendship with this woman who was also going through a divorce, and they kind of became confidantes. And, I wonder how much of his grief he shared with her. It's kind of pathetic that we've never talked about it.

I knew Keith four times longer than I knew my current husband. Jim is just so right there and in tune, and we talk about grief and children and dying, and he knows so much more about my feelings about Abigail than I've ever even told any of my family.

Nicole: Well, George and I definitely dealt with it pretty differently. George had a lot of anger, a lot of anger from day one, from when she was diagnosed. And I think I had come to terms with Rosie and with her condition and what the probability of her outcome was going to be way long before George had. Maybe even weeks before Rosie passed away, George was still very much pushing that we were going to find a cure.

So her passing, I think, snuck up on him much more than it did me. I think I'd been preparing for a long time. After she passed away, we did talk to one another a lot. He wanted to talk much more than I wanted to talk. I internalize more than he does. He's much more vocal and wants to share and talk, not necessarily with other people. For instance, most people at work had no idea. It wasn't until a few months before she passed away they had any idea she was sick. He just didn't readily share it with people at work, but we talked to each other a lot.

As far as my friends go, they would ask, and I have got wonderful, great friends. They would ask after she had passed, you know, "How are you doing?" I needed that more when Rosie was alive, going through what we went through. Her care was so 24/7, and it was so emotional. In the middle of the night, I was constantly running to her room cause I heard her gagging, and I was afraid she was going to die at any second because I couldn't get there in time to suction her throat. Her living, I felt, was totally on my shoulders. Life or death. So I really needed more support then, but I didn't ask for it cause I'm not one to do that.

But I think Rosie affected just about everybody whom George and I shared her story with. My friends have even said they treat their children so much differently. [They're] just so thankful for their health and that they have them, so I'm glad about that. I'm really glad that she touched people in that way. Hopefully, they're better parents for it, for knowing her and for knowing of her.

Debbie: I don't even remember where my friends were. I don't remember where my family was. I just felt like everyone just carried on [in] their own little lives. So to have friends is just wonderful. It's great for you. You need that. You need to be able to let them in though too, and I probably wouldn't have let them in anyway.

Monique: Yeah, that's hard. I think I internalized a lot, like you said. I think that my family wanted for me to need them more. When he died, we were home. My sister came over, but even after, when he had died, and they had taken him away, I know my mother was very hurt that I didn't want her and my dad to come up immediately. But I just didn't. I just didn't want them to come.

We did eventually have a service with just family in my sister's backyard. I mean it was beautiful, and everyone got to say what they needed to say. My sister-in-law wrote him a letter. But at first, I just couldn't even think about that. I just didn't want anybody around. I just wanted to be left alone. I don't know if it's because this is very painful for them too, and I just could not deal with their pain on top of mine. I just couldn't.

Even still, just thinking about my mom at the memorial service, she was just so devastated that I just couldn't… On top of everything else, just to see how far reaching this is and how it affects everyone in your family and people who know you and people who only know you a little bit. You know what I mean? It's just overwhelming to me.

Debbie: It was so overwhelming. There was so much sadness… I felt like I needed to be away or be different because I just couldn't handle the sadness. My parents probably wanted to be there, but at the same time, they were just so sad themselves that they couldn't be parents to me. And they couldn't be the parents that I wanted, but I didn't even know it at the time. I know now what I need from them, but now it's too late. Coulda, woulda, shoulda…

Monique: Well, and a lot of people said to me exactly what they say don't say to somebody, "Don't worry, you'll have another baby." People say that! Or like my dad would say, "You know, think about your grandma. She lost two kids."

And I'm all, "That's horrible, Dad, and it doesn't make me feel any better."

Debbie: Or "It's just meant to be." People don't know what to say. They don't. I just got a little notecard from a gal in my mom's group. She had a baby, and it must've been stillborn. Me, of all people, I should be able to call her, but I don't even know what to say to her. For one, I'm just so incredibly sad, but I don't know what to say. God, I should know what to say.

Monique: I don't know what to say now. I mean, looking at that list [of interview questions]… Even when you have lived through it, it's just such a personal experience. It's hard to think that you know anything about it really.

Sheri: Could you put into words what you think you needed at the time? Nicole, you said you needed the support during [Rosie's life], and that's really eye-opening to people cause we may not even get it.

Monique: Even though the experience is similar, it's like anything else. There's not one way to respond to it. I think generally speaking the best thing to do is just be with the person where they're at and honor where they are and don't try to make it better. You can't make it better.

Actually my very close friend lost her fiancé. He died in a freak accident at work several years before that, and she was so good. She just kept saying, "You know, Monique, I know there's nothing I can do for you." You know, she knew that. [She would] be there and be my friend, but she never tried to say anything to make me feel better. She was just present.

Sheri: That was probably so refreshing than all the people trying to make you feel better and do and say the right things. It's so agonizing to watch people do that. What have you learned about grief and mourning?

Debbie: I think it's a definite process, this whole little circle, and it's so hard to have each part of the process in line.

Monique: The cycle of grief.

Debbie: Yeah, the cycle. And when it happens, [it's hard] to go through it when it happens and not push it away. You know, cause [grief is] going to come up for you. It came up for me three years later with Keith, and it was just so much worse cause I don't think I ever dealt with it back then.

Monique: In the Sharing Parents class, they give you this thing about the cycle of grief, and I think it's more like a spiral. It's not like you just go through it once. Each time you experience it, you evolve a little bit and you experience it in a different way, but I think you just continue, or at different times, things bring it up. It's not something that you ever really rid yourself of.

Nicole: It's not like you grieve for a year and that's it.

Monique: It's a new part of you.

Nicole: Yeah, I feel the same way. Like today, George struck up a conversation with me, and I instantly went right there whereas I don't think I addressed it, you know, after Rosie passed. I feel like it just keeps coming up, and I get little bits and pieces of grieving here and there.

Debbie: One of my husband's mom's friends who's 85 years old had a child die in a pool sixty years ago, and I want to talk to her. I want to know, God at 85, are you still grieving? Do you still think about it? I want to know that.

Sheri: I bet she'd say, "Hell yeah."

Monique: I can look at [Gabriel's] pictures now, and if I'm in the space where I need to grieve, I can feel that, but I can also feel [like I'm] just looking at his pictures, almost like he's not gone. I don't know. I can have happy memories about it. I can feel good parts of it too and not just this overwhelming sense of despair. Or just missing him. Just missing him. It's not so charged with only [grief].

Nicole: I don't think I'm there yet. We've got pictures all over the wall, but I purposefully put [the memory of losing Rosie] in the back of my head. You know, if I look at an album, if I go to the day where she was passing, I put it out. I can't think about it. I can't handle it. I can't bear it at all.

Debbie: I remember it took me a long time to be able look at Abigail's eyes. You know, her pictures were everywhere, but I could not look at her in the eyes.

Lily probably looks more like me where Abigail looked like me and Amelia looks like her dad. It's been fun and sad watching Lily grow cause I see Abigail's personality in her. When Lily started making sounds and she was talking, I just realized all the sudden "Oh my God, I can't hear what Abigail sounded like anymore." So I made Jim watch videos with me just so that I could hear [her], hear her voice, and I tried really hard to keep that. I can't hear her anymore.

Nicole: And that's the worst.

Debbie: It's hard, but thank God we've got videos, and I can go back.

Nicole: I think one of the things it's taught me is I was very afraid of death, very, very afraid of death. Then Rosie passed away, and it's like I said before, our daughter's up there waiting for us. I mean there's still a little bit of fear obviously since I have Claire now and hopefully I'll have more children, and someday you're going to leave them, but I'm not anywhere near as afraid. I just realized that this is going to be an extension; it's just going to be another part of life. It's going to be good really. It's going to be good. To see her again.

Maybe that was my lesson. I try to find the lessons too and try to figure out what on Earth was I supposed to learn from this tragedy? Maybe that was one of them.

Monique: Did you guys bring pictures? Did anyone bring a picture? [all exchange and enjoy photos]

That's one of the hardest things for me is I don't get to show his picture [Monique cries as she talks]. I had a friend who I met through the Sharing Parents, and she carried her son's picture around in her wallet, and she would show it and then go into the story, and I just couldn't do that all the time. I didn't really want to go into it with people I didn't know that well.

Nicole: You know, I just put this keychain [with Rosie's picture back] on. I feel uncomfortable for the people who ask me. [People would ask], "Is this your first?" when I was pregnant right after Rosie passed away. Constantly that question came up, and I felt more uncomfortable for them because I'd say, "No, I just had a daughter that passed away." I mean, [they'd go] white.

Monique: It's so traumatizing.

Nicole: And so I didn't keep the keychain. I told George, "I can't do the keychain. People just ask me about her. It's hard for me and it's hard for them, and I just now put it back on.

[When people ask], "How many children do you have?" like you said. I change my mind every time. It depends on who is asking me.

Debbie: It's been hard for Amelia. She just [says], "No, Mom, you have four," and she will correct me every time in front of people. I shouldn't say every time. She's getting to where [she asks], "Mom, why do you say that? You have four children."

I'm like, "Well, because Abigail isn't here with me, and it makes people really sad, and I don't like to make them sad."

But I'm kind of to the point where some of Amelia's classmates know cause Amelia will tell all her friends. The first time they're over our house, she'll tell her friends, and so I'm trying to figure out a way to come out with [the story about Abigail]. I just feel like a fraud, I do.

Sheri: Okay, this one we've touched on a little bit, but I think it would be a good one to focus on. What have you learned about yourself, particularly yourself as a mother through this experience of loss?

Nicole: I had no idea what I could actually physically and emotionally deal with. I had no idea of the strength that I had. Before Rosie, you know, you hear stories of people losing their children, you just think, "How can you survive? How could you go on?" But living through what we did with Rosie and going on, it definitely taught me I had a huge amount of strength that I had no idea that I had.

Monique: Both of you have gone on to have other children, but I am in between somehow. I'm curious about myself in that way. I feel as if I am still in my infancy as a mother. I can say for the brief period of time that Gabriel was alive, I'm just so proud of myself. It's one of the things I'm most proud of.

Before [Gabriel] was diagnosed, it was frustrating and you're wondering what's wrong and everything. And then, [I made] just this switch over into this completely unconditional love. I felt challenged in a new way, giving in to such acceptance. I was able to get past myself and just focus on this person who needs me.

Debbie: I have a huge appreciation for the [kids] that I have. I just think, "God, they're just such gifts." I don't want to take them for granted. I want to really just cherish them because bad things happen to good people. Jim and I talk about this all the time. It's just so much work to keep your kids alive.

It's been hard for me not to always compare my next three to Abigail. When Lily was born, I was constantly looking back at Abigail's calendar, all her milestones. I didn't keep [records] very good with Amelia. I just think I was a wreck. I remember so clearly all of Abigail's milestones, and so I am constantly comparing.

I was just talking to my husband about it this morning. I was like, "You know, God gave me Amelia. Just so opposite to Abigail. But then he gave me Lily who's just enough of Abigail to be a memory. And then I have Daniel who's just this boy! I never expected me to have a boy, but I can't compare him to anything. And it's wonderful cause I feel like I just enjoy him so much because he's not Abigail, and he's not a girl, so I can't compare anymore. They're huge gifts, and I wish for everyone to get what a gift kids are too.

Sheri: This question addresses just a couple of you. [Debbie and Monique], you are in new marriages since your loss. How does your new spouse deal with your ongoing sense of reflection, sorrow, and loss?

Monique: Well, Loren is just so wonderful about it. I'm more worried all the time, like, "What a drag for him." It's just not something you expect to have to deal with, and he's been really good about it.

In getting divorced, like you mentioned, [there's this] feeling like that's your last tie to the child who died. And Richard and I will always have [our memories], and I think Loren feels that a little bit, like he'll never really be on the inside of that experience. He can only get an idea of Gabriel, and he can look at his pictures and he hears other people talk about him and me talk about him, but he's kind of an outsider in that way.

But I have to say, I feel really lucky. [Loren's] always willing to listen to me if I need to talk about it. I wonder, "God, would I be so patient?" [laughs]

Debbie: Jim knows that from Mother's Day to Fourth of July, my emotions run high. I'm not even aware of it. He's like, "Debbie, you are always just emotional [at this time of year]… Mother's Day is a drag for you, I know, and then you have Fourth of July" because Abigail was born on July 9th. You're not even aware of it, and I'm not. But it's just so good to be able to talk to Jim about it cause I never talked about it with [Abigail and Amelia's] dad.

Jim's always been really compassionate and on our third date, I told him about Abigail, and he just cried. We were in Paesano's Pizza, and he just cried. Jim can cry…he's just so sweet. He's been very sensitive to the whole thing, but it hadn't really hit him fully until now Lily's the same age that Abigail was when she died. Lily's almost three, and we are counting the days down to her birthday. Three-year birthdays are so huge for me. He's been right there, but he's like, "I haven't really understood it or felt it until I had my own child that's the same age. She's a person."

Monique: This really kind of blindsided me. We just got married in January, and at first, all the sudden after we were married, it brought up this resurgence of grief for me. I think it partially had to do with leaving that life behind, like really moving on.

Now we're talking about having kids and thinking about it, and I don't know if guilt's the right word, but just a fear that I won't be able to keep Gabriel as alive or that he's being left behind. Loren's been really sensitive to that. Time will tell how we'll feel when we actually have a [child]. I'm sure it will bring up a whole other can of worms, you know?

Debbie: It's been so good for us because it forces us to really talk about stuff, and it's good, important stuff. It just has brought us closer.

Monique: I think if circumstances would have been different, I would have had another baby immediately after Gabriel died. Not immediately but within a year or so, most definitely. That was part of it too, just feeling like there's so much that's going to have to change before I'm ever [ready to have a child with this person] again.

In some ways, that was good. [It] allowed for healing in a certain way, but now there's going to be a lot more coming that you just can't address until you're there.

Debbie: Every different thing… Daniel brought up stuff, Lily brought up stuff… You just have so much different life stuff that just makes you relive parts of [your loss].

Sheri: [Nicole and Debbie], you have had more children since your loss. Tell me about that experience. How do you/will you talk to your children about the child you lost?

Nicole: Boy… So I was pregnant. Rosie passed away in April and I was due in September, so we had Claire already when the first Christmas came around. That's a huge one. So all these issues came up about, you know, stockings. Do you put the stocking up for your child you lost and all these kinds of things?

And pictures on the wall, do we take some down to make room for Claire? My husband and I, we have to come to this place where we both feel comfortable.

I'm sensitive to the fact that I don't want Claire and our future children to feel this shadow. I don't want them to feel they're in [her] shadow. I do want them to grow up knowing that they have this sister in heaven. So I'm still trying to come to terms with how to find that balance. So what we did was put Rosie's stocking up where she's buried. We did it that way.

We tell Claire all the time, "That's Rosie. That's sissy." There's just no way not to. [Rosie's] just such a part of our lives. And Rosie, it's her sister. [Claire's] just going to know she has a sister in heaven.

Debbie: That's just so hard. We did that with Amelia, and at times, Amelia was in her room [pretending to be] playing with her sister.

[Abigail] was just so much a part of us, a part of my life, and I didn't have pictures everywhere, but as Amelia got older and saw other families with siblings, she saw these pictures and [started asking], "Where's my sister?" Having Lily was just the best thing to happen to her because, like I said, she finally now had a sister that she could play with and was living.

When Lily was a baby, Amelia was afraid something was going to happen to her. For being nine years old, she's on task with those babies cause she's afraid. She's just afraid. She knows death all too well. Lily doesn't quite get it because we probably don't talk about her in the same way that I did when I was by myself with Amelia. Amelia's just more sensitive. But Lily will say, "Abigail was my sister."

It'll be interesting just to see the transition of how Lily deals with it cause I've seen the way Amelia does. It's really sweet to hear Amelia talk about Abigail to Lily. Amelia talks about her like she's there, and she knows her, and she doesn't. But they all kind of know her a little bit, just by [the way] Amelia tells Lily about her. You want to honor them and keep their spirit alive in your home and to have that balance.

My mom and dad have always put a stocking up, and I'm like, "No. Santa Claus doesn't come to children who aren't here."

Nicole: Right.

Debbie: It's just…my dad… It's so hard because then I feel like I can't tell my dad because I don't want to hurt his feelings. And I have. I've hurt my family's feelings so much because I can be very direct…

Nicole: I feel that way with my husband too. I have to be so delicate cause it literally crushed him that I didn't want to have her stocking up. Like cards he gives to me, he puts Rosie and Claire. And we just celebrated his dad's birthday, and he said, "Make sure you put from Rosie and Claire."

And I just said, "Honey, I don't know that we should be doing that. I don't want to hurt your dad because for me, it hurts me. It's okay, you can sign Rosie's name for the cards for me cause I know that's important to you and it makes you feel good." But it does, it does hurt me because it reminds me that she's not there.

So he's just right there still.

Debbie: [He's thinking] don't forget her.

Nicole: Oh yeah. And it's not forgetting, it's just…

Debbie: She's part of it. I know it's so hard.

Sheri: Tell me about your experience of going forward. Have you experienced any guilt or maybe a sense of healing as you've moved forward?

Nicole: That g-word "guilt."

Debbie: Yeah, guilt's huge because what kind of mom lets her kid die?

I try not to think much of it because I just feel like Abigail was just such a strong-willed person and she would stack things up next to a counter and she'd get up on the refrigerator to get the cereal. I caught her sitting on top of the refrigerator before. She was two. So she just had that. I don't know. I guess I don't have that much guilt because we all had our part in it, and part of it was just her personality.

But, like I said before, eleven years later I've got all the messages I needed and learned from it. I'm just really thankful to have had her in my life, and I feel like I'm a better person. I've kind of moved on in a sense. I still think about her every day, many times a day, and she's always in my brain, but life went on. I'm happy to be where I am, with the person I am with. It's just made me be a stronger person with the journey that I went through.

Monique: Yeah, I definitely think this is just the path that my life has taken, and as much as Richard and I had gone through together and learned from each other and at that time in both of our lives, it was good for us to be together and live through what we needed to live through, and Gabriel's part of that.

I'm just so thankful for my husband and the relationship that we have compared to some experiences that I've had in the past. And I really feel that Gabriel was part of the growth in me.

Even at our wedding. Our wedding was kind of nontraditional and wasn't very big. And we addressed Gabriel in our ceremony and in our program; we had a little [dedication] to him. In the ceremony, we made him part of the candle-lighting portion of the service because I really felt like everything that had happened had led me here to this, that was so much better in a way, you know? And I can only be thankful for that.

The guilt that is there about moving on and having other children is more double-edged. It's fear of moving away from Gabriel but also fear, even though everyone has this until they have their next child, you now, that I just want him. I hope I can move forward and not constantly be comparing that child to him and that sort of thing. I definitely feel like I'm better off for the whole thing as horrible as that is. Who wants that to be their impetus for their butterfly experience or whatever? But it had a positive effect in so many ways.

Nicole: I think guilt plays a huge role in my grieving for Rosie. The last few weeks became so horrible, for me anyway. I had a rocking chair next to her crib and I would sit and sleep in the rocking chair all night because she was so sick and I had to medically be there for her 24/7.

At the time, we were trying to get nursing, but you can only get so much, and she wasn't in hospice because it was really quick. I mean, it was [only] days really until we really [realized] it's happening now. I think always in the back of my head, I knew that we could lose Rosie. It got to the point where she was just [having] seizures all the time, and her body was just not functioning properly, and I would try to give her medicine to stop the seizures and the seizures were making her throw up, and so I couldn't even give her medicine. At that point, there was nothing I could do. Zero that I could do to try to help her at all, and she was in pain. I'm trying to give her morphine for the pain and she wasn't even getting that. I was praying for God to take her, and I'm a mother, praying for God to take my child.

And making the decision to take her home and to let her die cause that's what we did and, you know, I felt so horrible even for George's parents because I mean they probably [Nicole cries as she talks]… I don't even know, but I could really easily say that their [experience] was probably just as bad if not worse than ours. And so I felt like we were making this decision for Rosie who was so much a part of the family. I had to make this decision to let her go. So in a way, you feel like you're letting the family down.

But we know that we made the right decision. There's no doubt in our minds about that. But you still feel that you let your baby die. I just have to remember that we let her go to a better place.

Monique: I definitely felt that too. That's one of the reasons I didn't go online because even though Krabbes disease is very rare, you gravitate to other people [with children who have it]. There's this website called Hunter's Hope, and it was an informative helpful resource, but I also felt they were very focused on intervention. And Richard and I were very much like, "No, we just want him at home with us." And our families had accepted that, but definitely you feel like… I mean, I don't know if my parents would have done something differently if they had a say.

But there's a certain amount of guilt about, I can't believe I'm going to say this out loud, but just wondering if I was somehow comforted by the fact that I knew that he had a terminal condition, that there was kind of an end in sight in a way, which is so horrible. But the thought of this 24-hour care going on forever is so overwhelming. But it somehow comforted me, and I felt like I could just throw myself into it because I knew that it was limited.

But the other side of that felt selfish or something. Are you somehow relieved that there's no cure? Not that I really felt that way, you know. [It's] just the way you beat yourself up about that kind of thing.

Nicole: But see, I know what you're feeling because when Rosie passed away, I was at peace, and I felt guilty about that.

Nobody experienced exactly what I experienced. I mean, even my husband. I was so at peace, but nobody else was.

Monique: I was at peace in a certain way. It came a little faster than I had anticipated. I kind of thought, "Oh, he's really strong. He'll make it for 18 months." I mean it's so horrible to even be thinking like that, but I did. I was like, "Yeah, he's going to make it past the year mark."

But he needed to go at the end. The day before he actually died, he was really struggling, and we were home alone. At one point, he actually turned blue. I was holding him and singing every song I could think of and just begging him not to go. I just wasn't ready and I think he would've gone then, but I just couldn't and so the next day, I'd been with him 24 hours. He slept with us. I was never away from him, but I had to go to this meeting the next day. So my sister came over and the nurse came over, and I left and he died a half hour after I left when I wasn't there. It so devastates me [Monique cries as she talks]. I just couldn't believe it. I was gone for an hour.

But now, and the hospice people told me this too that, you know, he probably couldn't go with me there. Even though I thought I was prepared, I was just holding him back in a way.

Sheri: I keep thinking about the day that Rosie died and [Nicole] was holding her and singing to her, and it was just the sweetest sound [I cry as I say this]. I was like, "Nicole is the epitome of 'mom.'" And just singing to her, and I was thinking, "How's she going to go?" That singing is going to keep me here forever. Rosie held on so long. I was thinking, "How could she go?" Everyone was there, everyone that loved her. I understand why she took some time.

Debbie: You know, you guys got to hold them, and I didn't get to hold Abigail [Debbie cries as she talks].

Nicole: Yeah, we've experienced losing a child, but I still say it's such a different experience [than yours]. I don't know how I could do that. You still say, "I don't know how I could do that."

Debbie: My main guilt is that we were in the hospital, and we were in this little waiting room, my mom and my dad and Keith's parents. They were trying to save her, and they worked on her. She was already gone. This stupid doctor comes in and makes everybody leave. First of all, he comes in and just harsh, just so mean [says], "She's dead," and we kind of knew, but at the same time it was like, "Oh my God, how can you be so mean?" I heard his voice for years.

So we go in and she's lying on this table, and another emergency came in and they made us leave. And we just left, and I just, I feel so horrible. We just left [Debbie cries as she talks]. You know, I never went back. You know I never went back.

I guess she died on a Tuesday and we had her service on Thursday. And her ashes were ready the following Tuesday. We weren't going to have her in the ground. We were just going to bring her ashes home, and I went by myself. I just remember driving there by myself, walked into the funeral home, and I just picked up her little velvet bag, and I brought her home.

But just the guilt of not being able to hold her and say goodbye. It just happened. It just happened, and that part of the guilt I don't know how to get over. Be thankful that you guys got to hold your babies.

Monique: I just felt so lucky to have been able to be there and, you know, and I can't imagine how… I mean it's all painful. I just want you to know it's just…

Debbie: Well, through the whole process, you go through different scenarios in your head. You think, "Would this have been better? Would it have been better if I held her? Would it better if she was sick?" You play out different death scenarios and I don't think any of them are better. Maybe you're a little more prepared for it, but at the same time, it's the same result.

Nicole: I feel very thankful. We had family and our closest friends crowded in her little room and a pediatrician who lost his son very similarly eight months prior.

We gave her a bath after she passed away. She still had a fractured leg at the time, so I hadn't been able to give her a bath in days. I mean, picking her up, touching her caused her pain. And so we were able to give her a bath, and then my husband and I just lay with her. So I feel very grateful. We tried to create as much closure as we possibly could.

Sheri: Well, we touched on this a little bit too, but maybe we can just close with this. Most parents who have not had your experiences believe they could not live through such a loss. What is your perspective on this from where you are now?

Debbie: Well, I don't think I could go through it again, and I say this all the time, "I would die if anything ever happened to my kids." And I think that worries Jim so much because he is just so on guard. He says, "Debbie, I don't want anything to happen to these kids" because it scares him too. That's a huge responsibility, to keep your children alive.

But you have to go through it because that's the last thing you can do for your child is to live. I sort of felt like when I was planning Abigail's service, that was the only thing I could do for her. And that the last thing I could do for her is I had to live.

Now I just love the experience [of motherhood], and I wanted to have more children.

Monique: I hadn't thought this before this moment, but even us, who have experienced this, we think that if it happened again, we couldn't do it. And we probably could, you know. You just can't imagine it until you live through it. People who haven't experienced it can't imagine it, and we can't imagine ever doing it again, but I'm sure we could. God forbid we ever do, but I just think it's one of those things that you cannot relate to or imagine unless you're living it. There is no way to explain it.

Debbie: I can't even imagine.

Nicole: I know when friends asked me, you know, they make the statement, "I don't know how you did it." And my response usually is, "You would do the same thing."

Debbie: You have to.

Nicole: That's what you [do] as a parent. But then by that same token, like I said, if Claire started to have [seizures]…I don't know. I guess maybe because Rosie's end result was to die, so in my mind, if Claire were to start the spasms, I'd obviously think her end result would be the same thing so I'd just say, "Well, let's just do it now and get it over with. We'll all go be with Rosie." My husband would be right behind me. Or in front.

I guess maybe you would find the strength to just go through it again. I don't know. Surely God wouldn't be that cruel, right?

Debbie: Well, you try to think that he's not a cruel guy, but you wonder.

Nicole: Well, there's a mothers support group. It's a national one. They send out newsletters and stuff. I forget what it's called, MUMS or something, Mothers United for Moral Support. It comes out monthly and you see all these children with all these syndromes and disabilities. I mean it opened my eyes, and I have a cousin who's mentally retarded. She's older now. She's in her forties. So I was around it growing up, but I had no idea.

Monique: I know I have such heightened awareness now. It seems like suddenly everyone you meet has a child with a problem. Before that, I just felt so insulated from that really. I didn't know anybody who had [a child with an illness]…

Nicole: I almost feel like it's rare to be healthy now.

Monique: Yeah, I do. I definitely do.

Debbie: Because I was over 35, I had to have an amnio with Lily. After having Lily I was just so thankful. I was so stressed out that something was going to be wrong with her, and then even with Daniel, I think I was even more [stressed]. And my doctor's just like, "Can you get over it?" cause I would come in with these stupid idiotic questions about genetic problems, you know, things that could happen because I'm older and Jim's older. We don't have anything in our family, but I just kept saying, "Well, I've had lots of kids." So I thought that the more kids I had, the higher my percentages were.

And she kept saying, "Debbie, don't you remember the statistics? It goes down."

I just think with each one, I worried more.

Monique: But you know to me, statistical probability is not comforting anymore. I mean, Gabriel was 1 in 150,000, and it's recessive. Nobody else in our family had ever had anything like that. So until it's you… There's no comfort.

Nicole: Same with us. Statistics. Infantile spasms is pretty rare [1 in 100,000], but we ended up with a child who had it, and they don't know the cause of hers at all. They cannot find a genetic link, but they don't know. Maybe they will someday find something, but at this point, they have no idea what causes it. They just think in development, there's something that goes wrong with the brain. But she went into it when she was first diagnosed with the best odds. She didn't have trauma at birth. All these things were lining up that maybe the drugs would help her. The further we got, she just ended up in this little percentage with the worst odds, and then she passed away.

It's just like, "Don't even talk to me about statistics anymore because I don't care. It doesn't matter." It doesn't matter. Lightning can hit you anywhere.

Monique: Exactly.

Debbie: Well, it's just so good to be in a room with moms who get it, you know? Just get it.