The Christian Chronicle Podcast

Episode 145: How might the church care for parents of special needs kids? (Gigi Khonyongwa-Fernandez)

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Parents of special needs kids face a special kind of grief and a special kind of struggle. Yet, so often their needs go overlooked and unmet in their own churches.

Gigi Khonyongwa-Fernandez, author of From Rollercoasters to Carousels: An Emotional Support Guide to Healing for NICU, Bereaved and Special Needs Parents, shares her story and the emotions she and other NICU, bereaved and special needs parents experience. 

In this episode, she opens up about how parents like her deal with ongoing grief and trauma. Among the points that come up in this discussion are:

  • How we are all close to someone who experiences trauma, most of all in our churches
  • NICU, bereaved and special needs parents struggle to allow themselves to feel their emotions
  • Sometimes, churches do not make space for those who are grieving to grieve as fully and as long as they need

How might the church come alongside NICU, bereaved and special needs parents?

Links for this episode:

BT and Gigi reference both 2 Corinthians 1:4 and Proverbs 27:14

The Christian Chronicle's feature on Khonyogwa-Fernandez: https://christianchronicle.org/connector-in-chief-trauma-informed-coach-brings-the-world-together/

Donate to support this ministry of "information and inspiration" at christianchronicle.org/donate

Send your comments, ideas, and suggestions to podcast@christianchronicle.org

Healing Hands International will give you or your congregation a community and a direction to put the life and work of Jesus into practice. Learn more at hhi.org.

BT Irwin:

Family and friends, neighbors, and most of all, strangers, welcome to the Christian Chronicle Podcast. We're bringing you the stories shaping Church of Christ congregations and members around the world. I'm B.T. Irwin. May what you are about to hear bless you and honor God. In this episode, we'll be talking about what our guest calls NICU, bereaved, and special needs parents. As the name implies, these are parents whose children began life or perhaps lost their lives in a hospital's neonatal intensive care unit. They are parents who grieve the loss of either their born or unborn babies and children, and they are parents caring for special needs kids. I reckon you don't have to think very long for someone to come to mind who fits this description. I would not be surprised if it is you. The miscarriage my wife suffered in 2014 is one of the most devastating and heartbreaking episodes of our lives. As we record this episode, my next -door neighbor of 13 years just began planning the funeral for her special needs son, who she cared for day and night for 27 years. And I'm thinking of a family that stopped attending church because the stress of caring for two special needs kids and the congregation's attitude towards them made them feel like they didn't have a place there. What about you? Who comes to mind? We often speak of the Church of Christ as a place where everyone has a place, but how often does reality look like what we imagine? I don't say this to make anyone feel or look bad, but to be honest, that coming alongside and making space for people in extraordinary circumstances with unusual challenges is hard. None of us, by intuition, know how to do it well. And like those who have to learn to live with the challenges and emotions of being NICU, bereaved, or special needs parents, the church has to learn what it looks like to come alongside them and their families for the long journey. Our guest today has deep personal and professional experience with this. Gigi Khonyogwa- Fernandez is a trauma-informed leadership coach, consultant, and advocate with a deeply personal connection to trauma. She is the mother of a surviving twin born four months prematurely and what she calls four angel babies, children that did not make it to birth. From her personal experience as a NICU, bereaved and special needs parent, and her professional training, Gigi works full-time to support families going through the challenges that come with the loss of a baby or a young child, or with raising and supporting special needs children. She recently published her first book, From Roller Coasters to Carousels, An Emotional Support Guide to Healing for NICU, Bereaved and Special Needs Parents, which we featured in the Christian Chronicle. All the way from her home in London, England, she's here with us today. Gigi, thank you for being our guest. I'm sure there will be a lot of people who will be so glad to listen to what you have to say today.

Gigi Khonyogwa-Fernandez:

Oh, thank you so much for having me.

BT Irwin:

It's a pleasure. So before we get into the other questions, I reckon some folks may be listening who wonder what this episode has to do with them. Maybe they're not parents who have personal experience with losing a child or supporting a special needs kid, or sharing life with parents who are going through those experiences. What is in this episode for them? Why should they stick around to the end?

Gigi Khonyogwa-Fernandez:

Because of you and I. That's why they should stick around to the end, both of us. But I think trauma happens to all of us in many different ways. And, you know, being able to understand how to face it and navigate it in a way that's healing and really forward-moving and powerful is I think a really good reason. So it's not, I know the target audience initially of my book, you know, are NICU, bereaved and special needs parents, but it's really all of us that go in that space. You may be supporting someone, you may experience it yourself. And I think as we talk today a little bit more, because we're talking really talking about the emotional trajectory, the emotional journey that stems from trauma. So all of us have experienced some degree of that in some way. So I think it's, it's, it's an, it's a topic that resonates with us with us all.

BT Irwin:

Yeah, we're gonna come back to trauma in a little bit. But before we go there, I think it's really important for people to know your story. So would you be willing to share that with us?

Gigi Khonyogwa-Fernandez:

My story is that I, I lost several pregnancies. So I lost four in total, two that were second trimester, and and have a son who was born at 24 weeks, so was just about the size of my hand, and was, he was a pound at birth, less than 10% chance of survival, expected to survive. Um, and we were in the neonatal intensive care unit, what we call the NICU, for about six months. This part of my story started within that, and then my son experienced multiple things, but one of the things he experienced um was something that's called retinopathy prematurity, which just means that because he needed so much oxygen, the oxygen caused his retinas to detach. So he lost the majority of his vision. We say he has the Stevie Wonder disease, which is the same thing Stevie Wonder has. So very, very quickly, within a very short space of time, I was a NICU parent, I was a loss or bereaved parent, and then I became a special needs parent. And that, those experiences are not a one-off. It's not just okay, you have it, and then you kind of, those things permeate your entire life.

BT Irwin:

Yeah.

Gigi Khonyogwa-Fernandez:

And so my journey of experiencing that as a parent really changed, was, it was life -altering in so many ways. A, for living in it, but also how people responded or didn't respond to you within that space. When you have any kind of life-altering event happen to you, in many ways, there's not a path. My son just turned 19. Many of these years, I sort of felt like I was a bit of, a little bit in a forest. And, and so part of the reason of writing the book was to, was my, to share a little bit of my journey, not all, but really about how do we look at that emotional piece that oftentimes gets missed. And and, you know, people say, oh, you get over it, you know, it's God's will, et cetera, et cetera. And all these little sound bites that in the moment are not helpful at all. So I think for me, my my my journey of living, living it, and also my professional hat of you know being a healthcare, being within healthcare both both in the US and in the UK, which is where I'm based now, and also being a coach, a coaching consultant and a trauma-informed coach, it's very different to live to know it and then to live it. I mean, those parts of who I am have merged together, yeah. Particularly along the emotional journey, because I, I often I see it now in so many ways, people are broken and people don't know what to do with that brokenness. And so part of, part of my work now is as I my way of giving back is that I sit on some boards, both in Europe and in the US, within that maternal, infant health space to really try to make a difference and try to make a change with how we support families and how we support providers within this incredibly traumatic space so that they can be healthy, so that they can heal.

BT Irwin:

Yeah, you mentioned in the, at the start of your book that you went looking for books for parents like yourself, and you couldn't find, you couldn't find many of those books. So you wrote one yourself. Yes, yeah. The heart of your book is uh seven emotions that are common among NICU, bereaved and special needs, special needs parents: anger, anxiety, fear, grief, guilt, overwhelm /stress, and shock /disbelief. You interviewed so many parents for this book, and their stories and their quotes are spread throughout the book, and they are really impactful. In reading through the chapters, one of the things that struck me hard is that parents going through these seven emotions struggle the most, it seems, with feeling like they shouldn't be feeling these emotions at all. Um, that's one of the takeaways that I got. So, why is it? Why is it that NICU, bereaved and special needs parents have such a hard time allowing themselves to feel what they feel?

Gigi Khonyogwa-Fernandez:

This, this is such a such a common experience of these emotions, but it's an often silent experience. And I think that is why one of the reasons why you said, like, you know, why why don't parents allow themselves, I'm paraphrasing what you're saying, sort of paraphrase, allow themselves to feel. I think it's because it's silent. And many times when you're going through this space, that is not the norm. But the other big, big part of that, and what I alluded to earlier, there's not really a space within congregations, within workspaces, even within families, to be safe, to to share your story, to share your experience, to live your experience in a way to where it's just there. You don't, you don't without any judgment, without any, oh, you must do this, or without any, oh, I knew so-and-so's whose you know, child had da-da-da-da-da, whatever. Well, no, parents are in this this limbo and also quite frightening space because they don't, they haven't, they haven't really sort of allowed themselves to think of yourself as a parent. Because when when they're when the the journey is not what you expected, there's a lot of questions about , "Am I a parent?" Yeah. Because you know, my child is, you know, 15 but still in diapers. Or am I, you know, so that you have you're really questioning your identity. And so I think there's a, there's a, there's a lot of shifting of who you are as a person. Then there's a lot of shifting and sometimes complete breakdown of your supposed support network.

BT Irwin:

Yeah.

Gigi Khonyogwa-Fernandez:

And I say supposed it because so many parents have shared, and we experienced some of it ourselves, is you know, the people that you thought were going to be there were not.

BT Irwin:

Yeah.

Gigi Khonyogwa-Fernandez:

Or they were not in the way that you needed them to be. And whether that was, you know, physical or whether it was emotional, whether it's the spiritual, et cetera. So I think those two to sort of summarize, I think those are the some of the many reasons, but those are the two main reasons. People, you know, parents don't feel they don't feel a sense of safety, but also there's a, there's a loss or of of their identity. So there's this constant, the constant questioning of who you are. And not that that your identity is is is only within that box of parenting, but when you enter that space, then you you're you're entering into a world of, of what's supposed to be sort of this normal little journey that you go to, go through. And and it doesn't happen. And and the other thing too is within that space, within the NICU and bereavement and special needs space, there's this, you have a lot of what I call, I think I said in the book, you know, pseudo-parents. So there are lots of specialists, doctors and nurses, and midwives and therapists and teachers, and everyone's telling you what you should do, what you're supposed to do. Your sort of God-given instinct and sort of of being of being a parent, of being able to navigate and make decisions, is completely taken away.

BT Irwin:

I find that those of us a certain age who grew up in the Church of Christ, everyone will nod in agreement with me when I say we grew up learning that guilt is the central theme in our Church of Christ worldview. And I have joked, and people laugh at this, that our unofficial creed is I should or I shouldn't, as you said. So, you know, 'If I want to be a good Christian, I should just get over it, be thankful, and get back to work in the kingdom.' Or "If I was a good Christian, I wouldn't feel angry, anxious, sad, afraid, overwhelmed, or stressed." So I can imagine how a NICU, bereaved or special needs parent in a Church of Christ context might struggle double with guilt for, you know, for having such overwhelming emotions. All of those parents, and for all those Church of Christ kids like me, for whom feelings, you know, feeling guilty for feelings and going through difficult, you know, can these emotions that you describe actually be godly, good and right?

Gigi Khonyogwa-Fernandez:

Guilt is so prominent because of our social structure, our church structure and the idea that, you know, like you said, you're not supposed to feel these things.

BT Irwin:

That's right.

Gigi Khonyogwa-Fernandez:

You know, if that's the case, why are we told, you know, to I'm paraphrasing, but like in 2 Corinthians, 2 Corinthians 1: 4, you know, about the tribulations, support each other within the trials and tribulations. Trauma exists. Sometimes we'll say, you've had this life event. Okay, it's happened. You know, God has allowed it to happen, whatever you want to say it. So within that space, you know, this is a little box, and it's been a year, two years, five years, 10 years, 20 years, you should be over it. Because if you're not, then the judgment comes in. If you're not over it, that means you don't, you're not, you don't have faith. Yeah, yeah, you're not alive. So the guilt is like compounded because not only are you feeling guilty, particularly in this space where you, you've it's not it's it's guilt about your body not working the way that you thought it was supposed to be, guilt about, and grief of your journey is not what you expected. So grief is not necessarily the loss of a child, but loss of your expectations, loss of what you thought you were going to have, you know, have. There's no time limit to that. And there's nothing that the very fact that he talks about trials and tribulations, he talks about sorrow, he talks about all these emotions, it is it is a reminder that they exist and they exist in us in different ways. It it's important to not, or stop looking at what's wrong with people. And say well, what happened to them? And as Christians, how can I help them carry that load? How can I support them and don't put a time frame on it, don't put a judgment on it. It's because God doesn't put a judge, doesn't put a time frame on us to say, you know, you know, you must be this and that you must be this way by this time. He talks about the growth, he talks about us as growing, you know, we have to continuously be growing. But how we grow and the pace that we grow, it may, it may differ. When children are developing, we give them a lot of grace. You know, they mess up, they own the bike, they fall down, the pickup, you know, there's this continual space and grace to figure it out. But as adults, some sort of way we've we've we've cut that off and said you're not supposed to. And I think that's very dangerous. All the emotions are heavy, but guilt is so heavy because we're carrying not only our own guilt, but we're carrying everyone else's that's mixed in with projection, mixed in with condemnation, mixed in with judgment.

BT Irwin:

How can the church be more present and supportive to those who are grieving? You know, most of all, NICU, bereaved and special needs parents?

Gigi Khonyogwa-Fernandez:

But two things. One is to allow them to be. There's so much power in the pause, power in the silence. And when you experience grief, and particularly if you think about it with grief of your pregnancy and grief of your there's no word for if you lose a child. There's a word if you lose a spouse, there's a word if you lose your parent, but there's no word. So even within our vernacular, there's nothing that that describes what you've experienced. So what do you do with that? But I think, I think the the the family of believers, wherever you are, you really need to number one, allow that person or those people or that family to be. And then the other, second part to that, that's married together is provide that safe space, like I was saying, that empathetic witness space to where you allow them to safely express what's happening to them. One huge resource to actually get you can you can kind of tap into, is the people experiencing it. What what means most to you? What would be most helpful? What would be most encouraging? How what would help you within your faith? And sometimes we we're we create stuff for people without involving the people that are going to be on receiving it. They're not in on the conversation, yeah, they're not in on creating it. So then we create this thing that is just there, you know, it's out there, but it's there's no connection to the people that are receiving it.

BT Irwin:

As a preacher, I, I am learning how to more and more think about who might be sitting in the audience and what they're going through. So instead of preparing a sermon to a you know, to a group of people who are all homogeneous and you know living their best lives, I try to consider who's in the room. There's a proverb I actually quoted, I'm I'm I don't remember the one. I'll put it in the show notes, everybody. Yeah, a cheerful voice is a cheerful voice is is is grating in the morning, or cheerful voice is upsetting to hear it. The proverb is like when you're having a hard time getting out of bed, you're not a morning person and somebody's like, "Good morning, sunshine," you know, and you just want to punch them in the face? I'll find it, everybody. It's, it's in Proverbs. But I, I thought about that a lot when I was deep in my grief. That maybe if we all were able to be more aware and more sensitive to the people around us and what they're going through. We're too busy to be interrupted as as Jesus was interrupted. We're too busy to slow down and notice the person and sit beside the person who's stuck, you know, and suffering. And that may be uh that may be a very Western, very Western phenomenon in the church. I there are a lot of people who listen to this in other parts of the world that may not know what I'm talking about.

Gigi Khonyogwa-Fernandez:

I think that is the key. You know, if we're really saying that we're Christ-like, Christ was always pausing, he was always seeing the unseen, he was all always seeing the hurt, seeing the you know, the people who are stuck. And many people around him, and disciples included, didn't send those people away, go let them do figure themselves out, you know, I'll paraphrase it. He was like, no, let's sit them down again. Like I said, there are people who are so broken that even the people who have learned to mask themselves in congregations. One of the mothers I spoke with in before the book said, you know, I I learned to swallow and minimize my grief because I was trying to protect everyone else around me because they don't want to talk about it. I wanted to talk about my son that died, but I couldn't. Time and time again, people would say, you know, I didn't eat, I didn't sleep. I don't even know last time I took a, took a bath. I don't know, you know, to know anything. And the people who would just go and do the laundry for them, go go buy some groceries, go sit with them, not sit and chat. If they needed to chat, they would, but just sit holding the hand. We're uncomfortable with silence, but sometimes silence can be the biggest healer. And but those practical things that you get from the people going through that, offering respite, you know, and just doing these things will, will decrease some of that busyness. Underlying all of the practical things is trust. You know, and so I, I part of these, these building things is, you know, starting with people who you trust and you're already close to. If they don't exist, beginning to develop that and like I'm just gonna go, is it okay if I just come and just have a chat, t hen we could just sit and have a coffee? Because what that does for the person in that in that space is it gives them a sense of normality. But it also what it does for you is it allows your eyes to be opened to see their reality. And then you can begin to, when you start creating whatever service or whatever mission that you're doing, it it is meaningful to that parent.

BT Irwin:

For someone who is a NICU, bereaved or special needs parent, what is gospel to them? What is the gospel according to to someone who is living with that grief and trauma and that difficulty?

Gigi Khonyogwa-Fernandez:

If you think about all the things that we've talked about, the hardest spaces are the places the spaces that we people tend to flee from. But that's where the gospel lives because it's it's requiring us to truly be present, is requiring us to truly sit and you know to be a Mary versus a Martha. Both were incredibly important and they both had their strengths. So I think that's where the gospel lies is that the the difficult spaces is where the light is entering. The difficult spaces is where God's healing is entering. And if we run from those difficult spaces, oftentimes we miss God. The gospel is sort of realizing that um, um the light exists, God's light exists within those broken, those you know, areas of brokenness within our hearts.

BT Irwin:

Well Gigi Khonyogwa-Fernandez is author of From Roller Coasters to Carousels, An Emotional Support Guide to Healing for NICU, Bereaved and Special Needs Parents. Link in the show notes. Gigi, what a ray of healing and hopeful light you must be to so many people. So thank you for shining for them and all of us here today.

Gigi Khonyogwa-Fernandez:

Oh, thank you so much for having me. This has been a really, really special space, um, to be in. So I don't take it for granted, and I'm really honored and touched. Thanks.

BT Irwin:

It was a pleasure to have you. We hope that something you heard in this episode encouraged, enlightened or enriched you in some way. If it did, thanks be to God, and please pay it forward. Subscribe to this podcast and share it with a friend. Recommend and review it wherever you listen to your favorite podcasts. Your subscription, recommendation and review help us reach more people. Please send your comments, ideas and suggestions to podcast@Christian Chronicle.org. And don't forget, our ministry to inform and inspire Christians and congregations around the world is a nonprofit ministry that relies on your generosity. So if you like the show and you want to keep it going and make it even better, please make a tax-deductible gift to the Christian Chronicle at Christian Chronicle.org/donate. The Christian Chronicle Podcast is a production of the Christian Chronicle Incorporated, informing and inspiring Church of Christ congregations, members, and ministries around the world since 1943. The Christian Chronicle's managing editor is Calvin Cockrell, Editor-in-Chief Bobby Ross Jr., and President and CEO Eric Triggestad. The Christian Chronicle Podcast is written, directed, and hosted by B.T. Irwin, and recorded in Detroit, Michigan, USA. Editing show notes and transcript services by Kenzie James, mastering mixing and sound quality by James Flanagan. Until next time, may grace and peace be yours in abundance.