Interview with Dr. Joanne Cacciatore, Founder of the MISS Foundation

It was an honor to get the chance to speak with Dr. Joanne about the MISS Foundation and how it all got started. I hope you can get the chance to read her beautiful words and about the legacy her daughter left behind. It is truly incredible and inspiring.

How did your idea for the MISS Foundation get started?

Well, I don’t really think I had a choice. When I was pregnant with my fourth child I went all the way to my due date and went into labor and she died during birth, about 15 minutes before she was born. She was eight pounds, 22 inches and they couldn’t find a diagnosable cause of death.

The hospital left me alone, really alone. I didn’t see a social worker, a chaplin. I wasn’t offered any support. They did do some really good things. They did take some really good photographs for me and I took some as well. But there was no one to follow up.

It was such a contradiction of what should be. To have your body betray you in such a way. To give birth and death simultaneously and then not to have any support in the aftermath.

I went home when they wanted to take her body to the morgue – which was about three hours after she was born. I went home to an empty nursery. The car seat was in the car — it was surreal. It was just bizarre. My milk came in, no one told me what to do with my milk – it was the most mind-blowing contradiction of what should be and very little support. Within a few months I lost a lot of weight. I got down to about ninety pounds. I almost died myself in November of ’94, she died in July.

It was such a contradiction of what should be. To have your body betray you in such a way. To give birth and death simultaneously and then not to have any support in the aftermath.

I promised myself and her that if I lived through it, I would make sure other families didn’t have to go through it by themselves. Two years later, just thinking that if I started an organization it could help a few people, The MISS Foundation was born. I had just become pregnant with my subsequent child. It was about two and half years later. It was truly bittersweet experience starting The MISS Foundation, but the thing that was the most staggering to me was the chasm between what families needed and what was being offered to them. We began to grow very, very quickly and before we knew it we had a chapter in Phoenix, Arizona and we were having support groups, and I was being asked to teach at hospitals. It just kept growing and growing. I think now we have 76 or 77 chapters now around the world

The thing for me was I didn’t want to name it after her, I didn’t want it to be about her – I wanted it to be about all the children and babies who had died and who deserve to be remembered. And through such remembrance came healing for people. I started to see it happen. I started to see that the key was not in forgetting our beloved dead and moving on but the key was integrating them into a new identity because we are changed forever the day our child dies. We are not ever the same person again. And that integration – I saw it transform lives, I even had people come to me fifteen years after the death of a child and they had felt soulless, so detached from their true, authentic self because they were not able to integrate their deceased child into their identity. We are being ushered by society to move on, that is what society does. We want it very neat, and very tidy and clean. And grief is not clean. It’s dirty, it’s messy, it’s ugly — and it’s also what’s incredibly necessary for us to transcend our place in the world and become who we are to become. It doesn’t make our child’s death okay, it doesn’t make it alright that we’ve transcended. Who I am today – I’d give it all back in a heartbeat to have my child. But what choice do I have?

I started to see that the key was not in forgetting our beloved dead and moving on but the key was integrating them into a new identity because we are changed forever the day our child dies.

When you saw that the MISS Foundation was making a difference in the life of others, did that bring some sort of healing to you?

You know, that is such a hard question. I think the peace and calm for me came from the realization that — a couple of things:

First of all, I don’t always feel a peace and calm. I have moments of incredible grief, even now almost two decades later. But when I do feel the peace and calm I think it comes from a place of incredibly deep feelings of connection to her. And I think that incredibly deep feeling of connection to her comes through the magnificent love of so many parents whose children have died – at birth, at five, at ten, at fifty. They died from stillbirth, and from SIDS. From suicide and from murder, and from drownings and from fires. From accidents and from disease and from cancer…

If you look at mass disasters and mass tragedies – the ones that particularly have been heavily publicized – what heals people isn’t the food that’s delivered. It’s not the homes that are rebuilt. Yes, those are all very necessary but what really heals people at the deep visceral level, is that other people care about them, and their coming to their aid. That’s where the magic happens.

This songa, or this community that we’ve built is also what brings me great peace. It’s incredibly tragic because so many children lost their lives, and yet people are now coming together to love one another through the heartbreak. And that truly is an amazing thing. What we’ve created – this community is what healed people. Community heals people. People coming together heals people.

If you look at mass disasters and mass tragedies – the ones that particularly have been heavily publicized – what heals people isn’t the food that’s delivered. It’s not the homes that are rebuilt. Yes, those are all very necessary but what really heals people at the deep visceral level, is that other people care about them, and their coming to their aid. That’s where the magic happens.

Whenever The MISS Foundation did take off, how did you go about contacting hospitals and spreading the word, or did they contact you?

Hospitals very actively contacted me. It was quite shocking, and also quite encouraging. I think hospitals understood that this was a message that doctors were not getting in medical school. The message of traumatic grief is a difficult message to deliver. Traumatic death scares people. It’s easier to talk about gerontology. It’s easier to talk about just about anything than the death of a child or traumatic death. Given that, I was quite surprised when hospitals continued to contact me. It really started with perinatal death and I was contacted a lot about this.

Katherine Porter said, “The past is never where you think you left it.” and no more truer words have ever been spoken about the death of a child. The death of a child affects people from one generation to the next, and we have got to get better as a society to get better and support families whose children die at all ages and from all causes, if we want to create a sane society.

It moved outward and people realized that they need to learn, they need to take for example, the ritualization that occurs in hospitals based on guidelines like JACO guidelines – about being able to hold and see the baby who died, and touch the baby who died, as well as giving families options. All very, very important – but why just for perinatal death?

I mean this should really apply to the mother who lost her eighteen year old son in a car crash. She should be able to climb up on that gurney with him, and wrap her body around her dead son, and tell him how much she loves him and how much she’s going to miss him. These are standards of care that should be implemented for all families, not just families of perinatal death.

I mean my daughter happened to die during the perinatal period but my love and compassion for other people extends far beyond that. I want to be an advocate for all families, and I work hard to represent all of them. I think hospitals started to realize that they should be doing this for all families whose children die. I mean it’s not just about the fact that babies die because babies certainly do, and they’re certainly overrepresented. No child is at more risk of death that babies all the way from birth to one year of age. But there are plenty of other children who die, and one child who dies is too much. We need to understand as a society that the death of a child doesn’t just affect the family, it affects society. Society doesn’t see it that way, but research suggests that there are physiological, in other words, health conditions that end up costing society, of course. There are economic and then the psychological, emotional and social effects are actually intergenerational. So when my mother’s mother lost two children – one at six months of age and one at one year of age, her first two – she went on to have my mother, and my mother was affected by my grandmother’s grief. And my grandmother who is rather detached, because she wasn’t able to integrate, and did not mourn – she was not able to fully love my mother in the way a child needed to be loved. And my mother- her mothering was affected by that.

Katherine Porter said, “The past is never where you think you left it.” and no more truer words have ever been spoken about the death of a child. The death of a child affects people from one generation to the next, and we have got to get better as a society to get better and support families whose children die at all ages and from all causes, if we want to create a sane society.

Loss (Explored)

Whenever you did start The MISS Foundation you mentioned that the hospitals were extremely supportive to what you are doing. Were your friends and family just as supportive?

This was my way of parenting her and other people needed to find their way – if it was to move on, that’s fine. If it was to just be externally supportive and say “Good job” once in a while, then that’s fine too. I didn’t internalize that and tried not to let it be a barrier to what I was doing and really just focus on what my responsibilities and duties were to my child who died.

Well, my children were little. So they supported me in the way a little child could. They would get excited, they would come to events, and remember their sister. My family, they are supportive in the sense that they say, “Oh, well isn’t that neat.”, but they’re not particularly involved. I know that it’s hard for families sometimes to see and even understand the pain, depending on the nature of the relationship with the parents of the child who died. What I found for me was that I just went inward. I asked myself What does this mean to you, and for me it was this ongoing connection to my dead child and I needed to mother her the same way my living daughter would get up and say “Hey can you help me with my homework?” or “Can you braid my hair?” or “Can you make me breakfast?”, I would do those things for her, I also needed to do something for my child who died.

In a sense, to be fair to my family I didn’t ask for a lot from them. This was my way of parenting her and other people needed to find their way – if it was to move on, that’s fine. If it was to just be externally supportive and say “Good job” once in a while, then that’s fine too. I didn’t internalize that and tried not to let it be a barrier to what I was doing and really just focus on what my responsibilities and duties were to my child who died.

You said you have 76 or 77 chapters around the world. Are you looking for people to start new ones in new areas or is that something you seek out?

We want people to join us – we want our community to grow. I don’t ever want a mother to be doing what I did in the few months after my daughter died – which was sitting in my closet by myself looking through the phone book trying to find someone to help me and my kids. I don’t want people to have to do that, I want people to have access to a proactive support group that says We are here to whatever degree you need us. You don’t have to come to group, even if you just use one service once a year – we’re here for you.

No family going through the death of a child should ever have to go to the internet or the phone book for resources – it should be readily available to them. That’s why it’s important to have chapters all over the place. We’re not doing this because we’re motivated by money, we’re doing this because we’re motivated by love. And that goes a long way.

If you are interested in starting a chapter in our area or get involved in any way, send an email to info@missfoundation.org. We ask people who are considering starting a support group be at least a year a half into their own grief.

I'm with you

Can you tell us a little bit about The Kindness Project?

The Kindness Project is all year round, but July 27 is International Kindness Project Day. The Kindness Project is all year. I do a Kindness Project at least once or twice a week, and I always have since she died.

So the Kindness Project is really about turning our hearts outward. We have a lot of programs at The MISS Foundation, but it’s my favorite program. I love The Kindness Project.

I felt in that moment something powerful. I felt that she’s not dead. If I can continue to love her in this world, this way she’s not dead, a part of her lives – because I love her.

It started that first Christmas. I knew that I couldn’t spend the money that was rightfully hers, I knew I couldn’t spend it on my own children or on myself. I knew I had to do something more meaningful with that money so I bought some toys for some underprivileged children and delivered them on Christmas Eve. It was incredibly bittersweet. There was something very spiritual about it as well. I had actually bought a certain number of toys – eight boy toys and six girl toys or something like that. I don’t know why I picked that when I did, it was very organic. I bought these toys, wrapped them and put them in this big bag. I had no idea where I was even going to go. I just got in my car, I was crying, it had been a very tearful morning. I packed them in my car and just drove. I thought I might go to the Children’s Hospital right here in Phoenix, and I got detoured and I ended up at a place called John C. Lincoln Hospital. I walked in and I said, “Are there any children here, I’d like to leave toys for them,”. The woman checked the roster and said “I am happy to say there are actually no children here in the hospital”, which was a good thing.

I headed toward my car. As I was going through the sliding doors the woman from the registration desk came running to me and said “Oh! Oh! Ma’am! I forgot that there’s a children’s learning center that’s open for underprivileged kids that’s around the corner. They’re open because a lot of their families have to work on Christmas Eve, so you might want to check over there.”

She said she’d call them to let them know I was on my way. I went over there and delivered the toys to the manager and there were the same number of boys and girls to the same number of gifts I bought.

I went to my car after I gave her the toys and I sobbed. It was incredibly bittersweet. I felt in that moment something powerful. I felt that she’s not dead. If I can continue to love her in this world, this way she’s not dead, a part of her lives – because I love her.

And that was a very powerful moment for me. A couple of days later I started the Kindness Project. It wasn’t a formal project at that point, it hadn’t really come full circle the way it has today. I just started doing random things for people. Buying shoes for someone at the shoe store who needed it and leaving. I didn’t want people to thank me. That was the thing – I didn’t want the recognition. A little bit like I don’t attach Cheyenne’s name to anything I do. I just need to know in my heart that I started if for her. Similar to that, I didn’t want people to recognize me and say “Oh isn’t this wonderful”. I didn’t want the recognition, I just wanted it between her and me – it was our secret.

When I formalized it, it was about a year and a half later, the summer of ’96 right about the time I started the foundation.

The Kindness Project is the epitome of what our organization is about. To come, receive and then when we’re ready – to give and to serve. And that is the true key to healing.

If there was one thing you could say your organization could use, what would that be?

If your gift is volunteering, please do volunteer. If your gift is that you have money to help us send family packets, please donate so we can do so. We cannot continue this work without a community behind us – so please join us, help us.

We are growing at an exponential rate. Everyday we get more and more new families who need our help and we just simply don’t have all the resources – not just the financial but the human resources as well.


  • Comment through Facebook

    comments

    Franchesca Cox

    Franchesca Cox

    Franchesca Cox is the founder and Editor of Still Standing Magazine. She is a yogi, artist and author of Celebrating Pregnancy Again and Facets of Grief, a creative workbook for grieving mothers. Learn more about her heartwork on her blog.

    RELATED POSTS

    LEAVE A COMMENT