[00:00:00.490] - Dori Durbin
After nine months of pregnancy, most new parents expect that their life with their new baby is going to just go as they imagined. And yet oftentimes, that's not how it goes. And sometimes even we find out that our children have special needs that we weren't aware of before.

[00:00:19.750] - Dori Durbin
Colleen Keefe Faul wrote the book God's Precious Gift: A Special Needs Child after having learned that her own child had needs that were beyond what she expected. And now Colleen uses her book, her voice, and her experience to reach others and show people just how generally special these children are. Let's listen in.

[00:00:43.230] - Dori Durbin
Hello, and welcome to The Power of Kids Book Podcast, where we believe books are catalysts for inspiring and empowering change. I'm your host, Dori Durbin, and today we have a special treat. Her name is Colleen Faul. She is not only an author, but she's also a mama of two and an advocate and mentor for other parents of neurodivergent children. So, Colleen, welcome to the show.

[00:01:12.550] – Colleen Keefe Faul
Thank you so much for having me, Dori, this is wonderful to be here.

[00:01:16.710] - Dori Durbin
It's great to connect with fellow moms, especially fellow moms who have kids who inspire their books. And I know that's the story, but I would love for you to share it in your own words.

[00:01:27.210] - Colleen Keefe Faul
Sure. No. Okay. So my book is called God's Precious Gift a Special Needs Child. And you can kind of guess from the title. My daughter, her name is Grace. She has special needs, and she was the inspiration for this entire book. So Grace right now is 22 months old, so she's almost two years old. And we initially found out about that. We found out that she had a pretty rare genetic disorder. We found out a little over a year ago about that when she was about six months old. And there were a lot of health complications that came with this genetic disorder, ranging from just physical developmental delays for her and also cognitive delays for her and neurodivergencies. She just actually, within the last month, got diagnosed for autism as well. So there were a lot of complications that came with her genetic disorder. And when we first found out about this, I as her mom, I was very scared. I was praying. I'm a very faithful person. So I was praying, and I was just, like, asking God, please. I was praying for a miracle. Please heal my baby. Please fix my baby. And it was in that space of prayer that I was inspired to write a children's book that was basically our story.

[00:02:59.130] - Colleen Keefe Faul
And the story is about a mom and a dad who have a daughter. And they're so excited to first have when their baby is born, they're thank God for our precious gift. And then the doctors tell them that this is going to be a very special child. And this child is going to have needs that most other kids don't have. And the parents in the book, just like I was really sad when they hear this, and they're a little scared, and they pray about it. And in the book, Jesus comes and talks to the parents, and he lets them know that he lets them know that he gave them this daughter exactly the way that she is. Not as a mistake, not as an oversight or a punishment, but he gave them to her as a gift, exactly the way she is, including all the things about her that are going to make her special, that are going to cause her to have special needs. He gave her to them that way on purpose as a gift, because he loves them. And he loves her. He gave her to them because they were the exact parents that she needs.

 [00:04:06.480] - Colleen Keefe Faul
And he gave her to them because she was the exact child that they needed, because having this beautiful daughter, she's going to be an avenue of grace to them, and caring for her is going to be a path to heaven that God has created just for her family, just for her parents to have. And it's a really unique book in the sense that it addresses the spiritual side of having a child with disabilities, having a child with any kind of a special need. And I see a lot of children's books that address how it's different, like how having some kind of a neurodiversity or being in a wheelchair or something, where it's showing how what makes them different is a wonderful thing. And that's great. But I haven't seen a whole lot of children's books that address the spiritual side of it, and this book does. And I think that makes it unique, and I think that makes it beautiful, and it speaks to my heart. As a mom, I didn't come up with the idea for this book. I literally woke up one night and wrote it down, and then I came back a few hours later and read it, and it was like someone else had written it.

 [00:05:23.590] - Colleen Keefe Faul
I think God just inspired me to write this book kind of as an answer to my own prayer, because that's the place that I was in at the time. And it was beautiful, and the book is beautiful, and it's relatable to kids, and it's powerful for kids to read, but it's also just as powerful for the parents to read. So, yeah, that's what brought that book about.

 [00:05:42.590] - Dori Durbin
There's so much there. Colleen oh, my word. I'm just thinking, first of all, of the gift that you got and the gift that you're giving, just the words, and I can hear you just even in your own voice, the understanding that is so much deeper than you're even mentioning.

 [00:06:00.050] - Colleen Keefe Faul
Yes.

 [00:06:00.960] - Dori Durbin
Yeah. I'm thinking through, like, when our kids were born and your expectations as a parent, you've survived through the whole pregnancy. They've made it full term XYZ check. And then you find out that there's something that has happened as an issue that's going to affect the rest of their lives in your family.

[00:06:23.840] - Colleen Keefe Faul
And that had to be really well, I'm not going to say it wasn't. It was absolutely difficult, and it still is difficult at times. But yes, it was very scary because all of a sudden, all of these hopes and dreams, just like you said, that I had for my children, for my daughter. Well, I have two children. I have a son and a daughter, but it affects them both. The hopes and dreams that I had for my daughter, for my whole family, literally in a day, were gone because this genetic disorder that she has, it's called tuberous sclerosis complex. All of a sudden, finding out that she had this, we couldn't take anything for granted for her anymore. Things that most parents kind of just assume and presume that their kids are going to grow up to do one day. Things, basic things like crawling, walking, learning to feed yourself, talking. We couldn't take for granted that she would do any of those things anymore because not everyone with this genetic disorder does. And so we literally have no idea what her future is going to hold. And I think that's scary. Yes, it's scary, but it also is a wonderful opportunity to truly walk by faith, which is what we're called to do every day.

 [00:07:46.440] - Colleen Keefe Faul
But it's really easy to fall into this false sense of security, of, okay, yeah, we walk by faith, but I know what's going to happen. We really don't know what's going to happen. So it's a reminder to trust God. It's a reminder that God is in charge. And it's a reminder that and the book says this. The point of this life is not to be normal. The point of this life is to get to heaven. And it's a beautiful reminder of what is truly important in this life. And it's just beautiful. It's been a roller coaster. I'm not going to lie. It's been a roller coaster, but it's been a beautiful journey.

 [00:08:27.500] - Dori Durbin
And how old is your other child?

 [00:08:29.830] - Colleen Keefe Faul
My son is three years old.

 [00:08:31.650] - Dori Durbin
So he's older.

 [00:08:32.380] - Colleen Keefe Faul
So they're 17 months apart.

 [00:08:35.650] - Dori Durbin
Yeah. So I think anytime that you're a parent and you have one child, you get used to the situations, right? Sort of. And then you have another one, and it changes the whole face of what life is. And then to top off, not knowing from day to day, that, in my mind, is so complicated. But in the same vein, I hear your faith. I hear how sure you are about why she's with you and why she's a part of your family. And I think that's just beautiful and inspiring. And thank you for that perspective because I think it'd be really easy to get weighed down and to feel hopeless and frustrated.

[00:09:09.640] - Colleen Keefe Faul
Yeah. And I'm not going to say that I haven't fallen into that trap many times over the last year. Plus, it's definitely been a journey and a struggle, but it's also been a beautiful opportunity to grow in Grace. And I find it just crazy that we ended up naming her Grace before we found out about any of this. We named her Grace, and she has become a very real, physical, literal avenue of grace for us through this. And it was a perfect name. And it's funny because I actually have been waiting to have a daughter since I was 14. I wanted to name a little girl Grace. I've been waiting to name a little girl Grace for over two decades. It finally happened, and it really was the perfect name for her.

[00:10:00.240] - Dori Durbin
That is amazing. It's another God sighting, right?

 [00:10:03.890] - Colleen Keefe Faul
Absolutely. Oh, my goodness. It's just another way of just affirming that, okay, God has known what was going to happen for a very long time, and he's been setting things in place for a very long time to get us ready for this, even though we didn't know we were ready for it.

[00:10:20.660] - Dori Durbin
So just out of curiosity, because she's still pretty young, how did you know anything was wrong? How did you know it wasn't like, a developmental delay?

 [00:10:29.070] - Colleen Keefe Faul
Anything just strange? Well, that's a really good question because at first, we didn't know anything was wrong. She was a little slow to meet milestones, but I wasn't super concerned about that because we thought it was just an issue with her vision. I mean, I have to wear contacts. My mom has a lazy eye. All the women on my husband's side of the family have bad vision. They need glasses, this, that, or the other. So I figured it's in the genes. She'll probably need glasses when she gets older, and she's not meeting milestones so quickly. Things like reaching for things, probably because she just can't see them, things like that. I rationalized in my head. And then I also took her to some ophthalmologists, some pediatric ophthalmologists who just told me, yeah, her eyes are just slow to mature, and they didn't raise up any red flags beyond that. So I was like, okay, well, she's on her own timeline. That's okay. Every kid is on their own timeline, and these milestones are just averages anyway. So that was at first, but then when she got to about five months old, she started doing these really strange arm motions where both of her arms would shoot up from her sides up to above her head at the same time.

 [00:11:44.290] - Colleen Keefe Faul
And when you looked at her, you could tell just looking at her, she herself, Gracie, was surprised by this. And then it would happen again, like, 10 seconds later, over and over and over again. And the more often it happened, the more upset she got about it. And we were a little I was like, this is not normal. We took her to the Er, and we ended up getting her an EEG. And with the EEG, they found out that she was actually these arms shooting up. These were actually seizures that she was having. And at first, before we found out about her genetic disorder, at first, they diagnosed her with a rare form of epilepsy called infantile spasms. And basically what that is, it's a rare form of epilepsy that happens in young children where the child is basically having hundreds of seizures a day, and they're happening in clusters, seconds apart, hundreds at a time, dozens to hundreds at a time. And that by itself was really scary. But when they found out from the EEG that that was happening, they admitted us to the hospital and did a lot of other tests, including an MRI of her brain.

 [00:12:54.970] - Colleen Keefe Faul
And the MRI revealed that she had tuberous sclerosis complex. She had tubers in her brain. Her brain did not look typical. And with the tuberous sclerosis complex, which is basically it's a genetic disorder where her body grows random, benign tubers all over her body. They can show up anywhere, literally anywhere on her skin, in her brain, on her internal organs, on her eyes, like, anywhere. And she had several of these tumors in her brain, which is what was causing the infantile spasms. So it all tied together. And again, it was a lot to take in. It was a shock. We had no idea this was coming. It was a shock that it was happening, and we found all this out in a day, within 24 hours. We went from thinking, okay, she has this rare form of epilepsy, to then, oh, goodness, she has this even more rare genetic disorder. And then we found out a couple of other things. She had a couple of holes in her heart. She had a couple of other medical things going on, and we had no idea any of that was happening before that day. And it was a shock to take.

 [00:14:10.990] - Dori Durbin
In just medically to understand everything that was going on, but then to realize that these things could pop up anywhere or that she even had additional things going on, that's scary.

 [00:14:22.390] - Colleen Keefe Faul
It was very scary. In hindsight, I'm very grateful that I had a foundation of faith to lean upon at that time, because if I didn't have that, I think I would have really gone. I mean, I was at a rough place to begin with, but I think I really might have gone to a really dark place at that point if I did not have God to lean on. So thank goodness.

 [00:14:46.570] - Dori Durbin
I think, too, he must have given you some sort of inclination. I mean, obviously the arms popping up and down was a sign, but it could have also, in another situation, maybe you didn't listen to that, and maybe you didn't find these things out, and it was another six to eight months later before you realized anything was even wrong.

 [00:15:06.370] - Colleen Keefe Faul
Yeah. Oh, my goodness, no. You have no idea. It was one of those things where her guardian angel really was really in top shape for her, because when she was doing these arm motions, I didn't know what it was. I just knew that it was strange and it wasn't normal. So I grabbed my husband. When she first started doing it, the first day she was doing it, and we went to the Er. And the, er didn't find anything. They took a chest X ray. They did a blood draw, and basically they sent us home telling us that she was just being fussy. They didn't even explore that it could be a neurological issue. They didn't even go down that avenue at all at that point. It was late at night. We'd been there five or 6 hours, and my daughter was asleep on my shoulder. I was like, okay. She's okay. Thank God. I will wear the overprotective mom the overreactive mom hat. I'm okay. She's okay. Thank God. Let's go home. And then the next day, but obviously, in hindsight, we know that that was wrong. The next day, I just started texting some of my girlfriends, just chatting it up, saying, oh, she'll never believe what we did last night.

 [00:16:19.760] - Colleen Keefe Faul
We went to the ER. And I was just describing to them what these arm motions were that Gracie was doing. And one of my friends read this description of what she was doing, and then she sent me a video of another baby doing these exact same identical arm motions. And the title of the video said Infantile Spasms. I didn't know what that was, but it just doesn't even sound good. So I jumped on Google, and I looked it up, and five minutes on Google told me it was a rare and serious form of epilepsy found in young children, and it needs to be treated immediately and aggressively. And the only way to diagnose it is with an EEG, which they had not done in the Er. The night before. So all that out, I got on the phone, and I pretty much kind of just had to put my foot down with the doctors that she needed an EEG today, and they wanted to send me to another hospital. They wanted to put me on the normal roster, and I would have had to wait over a month for her to be seen. And I really just had to be very firm with them.

 [00:17:32.910] - Colleen Keefe Faul
Not belligerent or yelling or anything, but just very firm. Like, I hear what you're saying. I understand what you're saying, but you need to hear and understand me. My daughter needs an EEG today. And they got us scheduled, and we got her in. And within a week, within days of these seizures starting, we got her to an EEG two days after they began. And then she was immediately admitted, done tests, and got her medicine days later. So we caught it very early, thank goodness, and we didn't wait, because I trusted that mom gut that I had of just like, no, you need to go mama bear on this. This is the hill to die on. And I was right, thank goodness. Once the EEG revealed that she had infantile spasms, the doctors were just like, they jumped into full throttle, and they were great. After that. They were just like, okay, we got to take care of this girl, which is wonderful, but getting her initially seen was not an automatic. We had to push to get her seen, which was emotional in and of itself. But thank God it all worked. God provided, and he helped me notice what was going on, and he made sure I had that friend in my life who would have the knowledge to send me this video so that I'd be able to get her seen.

 [00:19:11.300] - Colleen Keefe Faul
And it was just a lot of dominoes fell into place that ended up being what she needed. So thank goodness for all of that. It was just so many little miracles that I didn't recognize as miracles at the time. But now I look back, and I just see so many ways that God's hand was moving, that God knows what he's doing, and he's in charge.

[00:19:36.630] - Dori Durbin
It makes me think of what you said in the beginning, that God had given you her and that you were the parents for her. And I think that that's just more verification of that you had the right connections, the right instincts. Mama bears are great. They need to be there and never apologize for mama bearing, because, you know, as a mom, you just know when there's something that's not right and when something is urgent, and you have to go with that. I think that's amazing. And to have it turn around and come up with a book that you're using to speak to other parents is really encouraging.

 [00:20:17.170] - Colleen Keefe Faul
No, the book has been well, writing. It was therapeutic for me. It was just life giving just to write it, even if I had never published it or never gone any further with it. But I think I said this earlier. I was in kind of a sad place of just praying, just like, I want my daughter to be better. I don't want this for her. Just like, God, please take this from her. Please fix her. And that's what I was praying that I didn't come up with. I remember writing them down, but I don't remember coming up with them. And I really think that God just put these thoughts in my head to answer my own prayer. And I showed it to my husband. I showed it to my mom and to a bunch of people, and they were like, Colleen, this is beautiful. You have to publish this. Other people need to read this. And so that started us on a journey. I found an illustrator because I cannot draw anything more than stick figures. And so we got it illustrated, and then I ended up self publishing through Amazon, and the reception to it has been beautiful.

 [00:21:26.490] - Colleen Keefe Faul
I have had so many other parents of children with special needs reach out to me after reading my book, saying, thank you so much for writing this. This was just what my heart needed to hear or my child needed to hear this. Thank you so much. This is such a beautiful message. It either was something I needed to hear, or it affirmed what I already knew. Those have been the two main threads that I've gotten from people, and it's just been beautiful. The book is a perfect gift to give to somebody who has a child with special needs or especially just got diagnosed, a child who just got diagnosed with some kind of a condition. The language in the book is broad enough to be able to apply to anyone. It's not just my daughter's genetic disorder. It can be anybody, anything. And the message is also true enough to apply to everyone. It's not just children with special needs. Every child is given specifically to their family because that child is what that family needs, and the family is just what that child needs. Everyone is given deliberately out of love to their families.

 [00:22:44.850] - Colleen Keefe Faul
That's how God works. He works in love, and he has a plan for us. And there's just so much going on that we can't even fathom all the details in the plan that are going on. It's just incredible. And the book has been wonderful to have been allowed to be a part of it. I'm very proud of this book, and I think that it's obviously a very Christian based book. But I think anyone who reads it, even without their faith, even if they don't, if they're not a person of faith or a person of a non Christian faith, I think they read it and they are able to recognize the beauty in it. And I think it would comfort anyone's heart, I think. And I've heard it from both parents and from children who are just like, I love it. This is great.

[00:23:36.390] - Dori Durbin
We need to hear it. This is a good time.

[00:23:38.180] - Colleen Keefe Faul
Okay. No, I would love to read it. Okay, so where he is explaining how much of a gift she is, so I'm going to read it.  

"Jesus whispered further, you see, this child I gave to you is already so loved by me. I love her even more than you do, and that's a lot. And because I allowed her body to be so special, I made sure her heart and soul were special, too. She will love me more easily than most do, and her path to heaven will be easier than the one most others take. No, my beloved, I do not make mistakes. Jesus laughed reassuringly. Because I love you more than you could ever know, I have chosen you to be the parents of my precious gift. She will need such special parents. She will need exactly the two of you."

[00:24:38.330] - Dori Durbin
I love that. I love the conversation. I love the directness of it.

 [00:24:44.250] - Colleen Keefe Faul
It's gentle, but it's direct, gentle.

 [00:24:46.890] - Dori Durbin
It is, without doubt. It's not. I think it is, because I know that is awesome. Colleen, that really touching.

 [00:24:57.790] - Colleen Keefe Faul
Thank you.

 [00:24:59.020] - Dori Durbin
Good thing you stopped. I probably would have been crying on the other end.

 [00:25:01.600] - Colleen Keefe Faul
Yeah. I've teared up reading it myself more than once. Several people have sold me that. But I know this isn't a video, but this is beautiful.

 [00:25:13.430] - Dori Durbin
No, I've seen the cover and just thought it was just gorgeous.

 [00:25:17.410] - Colleen Keefe Faul
Yeah. Thank you. It was supposed to be something else. And then at the last minute, I got this idea for the book. And for those of you listening, the COVID of the book is a picture of the hand of Jesus holding out his pinky. And there's a baby hand holding on to the pinky of Jesus. And it's a baby hand with a hospital tag around the wrist that shows this is a child with medical issues, and Jesus is there holding her, always there. And that's the COVID And again, the book is called God's Precious Gift a Special Needs Child. And I feel like the title really says it kind of gives away the whole point of the book just in the title.

 [00:26:01.830] - Dori Durbin
Which is good, because I think when you're in that place that you were in, or if you're in a place where you're just doubting even your ability as a parent or just had, like, a rough something happen, you need that straightforward, like, here's your book, instead of guess which one. So I think that's excellent. I would ask you, did you have resources to help you?

 [00:26:33.230] - Colleen Keefe Faul
I'm sure they existed, but I didn't know how to tap into them. For us, we did not have any people in our immediate community who had a similar situation, anything like ours, who didn't have children with special needs or let alone anything as serious as Grace's condition is. So I didn't know anyone in my immediate circle of community who was able to relate to what we were going through. And so that was very isolating. I got a phone call from someone who was part of the Tuber Sclerosis Complex Alliance, and she was great. She had a conversation with me, kind of just talking to me about because she had a son with TSC as well. So that was good. I was able to talk to one other person at one point, they called, but there weren't really there were a lot of medical resources. We got Gracie into therapy. We got her signed up with early steps, which was great. And we eventually got her signed up for Medicaid, which helped with a lot of her medical bills, which was a godsend. So, yes, there were fiscal and medical resources that we tapped into, which was very still is very helpful.

 [00:28:02.480] - Colleen Keefe Faul
Thank goodness that those are there. But as far as emotional resources, I didn't find that there were too many because it is such a rare condition. It's not like if someone says my child has autism, it's to the point now where pretty much everybody has some clue of what autism is. At the very least, they've heard the word before and they know the kid who has it is going to be a little different. At the very least, they have that basic understanding. But no one knows, oh, my daughter has tuber sclerosis complex. No one knows what that is. So it was a little jarring and it was a little isolating to have that going on because just no one could relate. But I eventually was able to find some community and actually, as another result of this book, because in writing this book and publishing it and finding people to review it brought me naturally into communication with so many other parents who did have special needs children who did have children with different disabilities and different conditions that were, if not identical, at least similar to ours. And so it was really crazy how just this organic community kind of started blossoming for us because of this book, because people started reading it, and they started reaching out to me as the author to tell me their sentiments on it and just we'd start up conversations.

 [00:29:45.330] - Colleen Keefe Faul
And that was therapeutic. That was life giving too, because it was just something that I didn't expect to happen. Did not plan. Wasn't looking for. But it was such a beautiful gift that came as a result of this book that I found community with other families, with special needs children as a result of this book. And it was much needed and it was beautiful and it came from a place I never would have thought it would have come, which led me to become after some time had passed and I kind of got back up on my own 2ft. I started reaching out to families. I mean, I joined a couple of Facebook groups and I started reaching out to parents who were in similar situations that I had just been their child, just being diagnosed. And I knew exactly what kind of a roller coaster that was and I knew what a game changer it would be to have community. So I became a mentor for other parents with children who were just being diagnosed with medical conditions and somehow, again, didn't plan for that to happen, wasn't looking for that. But it was this beautiful thing where I started becoming a mentor to help parents along that rocky road.

 [00:31:09.220] - Colleen Keefe Faul
And that has been a beautiful journey and a privilege to be that person in someone's life that is so significant and can be such a huge source of sanity and comfort. Yeah. To be able to tell somebody how you're feeling and then be able to say, I get it, I've. Been there. And to not have to apologize or justify or explain for someone to be able to just say, I've been there, I get it. That's a big deal for someone in that situation. So it's been a beautiful thing.

 [00:31:46.740] - Dori Durbin
That's amazing. Actually, it's kind of funny that you worded everything this way because usually I ask, what are the two reasons that you think professionals, which I consider you to be, should have their own kids book? You can say it in your own words, but I think I know what you're going to say.

 [00:32:06.650] - Colleen Keefe Faul
To have a children's book, it brings you community. So it's a wonderful reason. To build your own community through a children's book is just a fantastic reason. And also, this book was therapeutic and life giving for me to create and to be able to then pass that on to other people who are able to read it and find that same comfort and just affirmation through reading this book. Also to be able to spread the joy that you have found through this book, be able to publish it and spread it around, that's another amazing reason to do it. And it's just like if God gives you a gift, you don't keep it to yourself, you share it. And that's why he gives us gifts, to share them and to make the world better. It's beautiful.

 [00:33:02.890] - Dori Durbin
I agree. Well, I know our time is ticking away and I have loved our time. But where's the best place for people to find you when they want to find your book?

 [00:33:14.190] - Colleen Keefe Faul
Okay, my book is available on Amazon. Again. It's called "God's Precious Gift.: A special needs child". But if you want to support me, the author, even more, I make significantly more revenue if you buy the book through my website, which is www.godspreciousgift.com, and you can find out all about my book there. You can buy the book there. You can find out about my daughter and her journey, her medical journey, and all kinds of fun other resources there. If your parents in need of a mentor, you can get in touch with me there. So, again, my website is www dot God'sPreciousgift.com. So you can either find the book on Amazon or my website.

 [00:33:58.830] - Dori Durbin
Perfect. Hey, Colleen, thank you so much for your time. I encourage everybody to check you out and to check your book out.

 [00:34:06.200] - Colleen Keefe Faul
Thank you. Absolutely.