Finding Purpose in Adversity: The Inspiring Journey of a Special Needs Parent (w/ Colleen Faul)

On this episode of The Author Factor Podcast  I am having a conversation with illustrated book author, Colleen Keefe Faul.

Colleen formerly worked in the home health industry where she organized services for adults with special needs. Today, Colleen is a mother of two, including a daughter with special needs. She is an author of the illustrated book, God’s Precious Gift: A Special Needs Child.

Learn more about Colleen by visiting GodsPreciousGift.com.

For more information about Mike Capuzzi, visit MikeCapuzzi.com.

Transcript

Mike Capuzzi [00:00:00]:

Welcome to another profitable episode of The Author Factor Podcast. I'm Mike Capuzzi, and I want to thank you for joining us. My guest today is Colleen Keefe Fall. Colleen formerly worked in the home health industry, where she organized services for adults with special needs. Today, Colleen is a mother of two, including a daughter with special needs. She's the author of the illustrated book God's Precious Gift a Special Needs Child. Colleen. Welcome to The Author Factor Podcast.

Colleen Faul [00:00:28]:

Thank you so much, Mike. It's great to be here. Yeah.

Mike Capuzzi [00:00:31]:

And I appreciate you spending some time with me today. I actually reached out to you when I saw your profile on Pod Match, and I was so intrigued by not only your journey and what has brought you to where you are today, but your book that you've published, the story about your daughter, which we're going to talk about here. So thank you for accepting my invitation to be on The Author Factor Podcast.

Colleen Faul [00:00:55]:

Thank you for having it was an honor to be invited. I was excited to be actually to be able to be on a podcast that was specific to authors, which I don't get to do very often. So I was very happy to get your invite.

Mike Capuzzi [00:01:09]:

Well, we're going to talk about this here in a second, Colleen, but one of the reasons I invited you is because of the type of book you wrote and why you wrote it and what it has done for you in the very short amount of time since you've published it. But before we get there, I'd like to hear a little bit of history, and typically, I talk about someone's business history, but you're more than welcome to talk about where you've been, but more importantly, your family, your daughter, and where you are today with everything.

Colleen Faul [00:01:35]:

Sure. Absolutely. So my daughter's name is Grace. She is right now 22 months old. She's almost two years old. But back when the was six months old, she started experiencing seizures, and we didn't know that they were seizures at first, but she started having these really weird arm motions where her arms would start off at her side, and then they would both, at the same time, just shoot up above her head. And she herself seemed to get really upset by this. And I was looking at her, and I didn't know what I was looking at. But a six month old arm should not just be shooting up like that, and it would happen over and over again, like, every few seconds. So we took her to the emergency room and eventually got her tested with an EEG, and it revealed that the was having something called infantile spasms. And what that is a rare form of epilepsy found in young children, where your child is basically having dozens and dozens of seizures in clusters up to hundreds a day, having seizures, like, every few seconds. And it's rare, and it can be very debilitating if left unchecked. So I was very grateful that we caught it so early. So as soon as they got her onto the EEG, they saw that she was having infantile spasms, and they admitted her to the emergency room, and they did 100 different types of tests. And in the course of all the testing, one of the things that they did was an MRI of her brain. And the MRI revealed that she had several lesions in her brain that revealed that she had a rare genetic disorder called tuberous sclerosis complex. And what that is it's an even more rare genetic disorder. And basically what it does is there's a mutation on her gene and her DNA that is responsible for regulating cellular growth. So her body is growing these random growths of cells that take the form of benign, non-cancerous tubers, and they can show up anywhere all over her brain, in her vital organs, in her brain, in her heart, on her skin, in her eyes. They literally could show up anywhere. And the has several of them in her brain. And that's what was causing the seizures, the infantile spasms. So it all kind of worked together. And the implications, the long-term implication of having this genetic disorder is there's a very wide spectrum. But in that spectrum, it can be very scary on the mild end where people grow up having this, and they don't even realize they have it until they could become adults, and they have what they think is acne. And they go into a dermatologist, and they're saying, hey, I've got this acne, and it won't go away. I can't get it off of my skin. And the dermatologist says, hey, that's actually not acne. Those are tubers growing on your skin. And they grew up, and otherwise, they were perfectly healthy, and they never knew. On the other hand, there's a very severely affected size, opposite side of that spectrum, where children with PSC or any I say children, anyone with PSC is very severely affected. It can lead to kidney problems and cognitive disabilities and mental retardation and autism, and some very severe developmental and health implications. These tubers that her body grows, they themselves are not cancerous, but depending on where they decide to grow and how big they decide to grow and how many there are, they can just really cause a lot of chaos in her body. And so we found all of this out in the course of a day. We found all of this out in about a 24-hour period. And leading up to us going to the hospital, we thought we had a healthy baby. We thought we had a perfectly healthy child, and then we find out about all of this other stuff, and she needs immediate medical attention. And it was really a roller coaster. It was a crazy, terrifying experience as a mom, and it was crazy. It was nuts. And it felt like the rug had been pulled out from under us. In the midst of all of that, trying to make sure that our daughter is taken care of and also trying to grapple with this new reality of what our life is going to be. We went from being a family of two young toddlers ready to grow up with the normal hopes and dreams that most families have to having a daughter with special needs who most things that are just basic, that families are able to just assume and presume that their kids are going to be able to grow up to do things like walking, talking, learning to feed themselves, learning to say I love you, Mommy. Those things. We couldn't take any of that for granted because not all kids with this genetic disorder ever grow up to be able to do that. So it was very scary. And I'm a very faithful person. So in the midst of that, I started turning to prayer and just having some very honest conversations with God. And in the midst of all of that chaos, the most random thing, I got inspired to write a children's book, which is what brings me here. And I literally woke up in the middle of the night one night with the idea for this book. And I got up, it was dark, everyone was sleeping, and I sat down for hours and just started typing. And the book, it's a children's book. It's not like a novel. So I was able to write the whole first draft in a couple of.

Mike Capuzzi [00:07:47]:

Hours that night, literally that night.

 
Colleen Faul [00:07:49]:

That night, literally that night I wrote the whole first draft. Yeah. And so I wrote it, and then I turned my computer off, I went back to bed right as the sun was coming up. I came back a couple of hours later and read it. And I kid you not, it was like someone else had written it. I remember typing it, but I don't remember coming up with any of this stuff and any of the things that are in it. And basically the book ended up being called God's Precious Gift a Special Needs Child. And the story of it, basically it addresses the spiritual side of having a child with special needs. It is the story of a mom and a dad who have a daughter, and they're so excited to have a daughter, and then they find out that their daughter is going to be a very special child and it's going to have needs that most other kids don't have. And the parents are very worried about this, and they start praying and they're praying, God, please just fix our baby. We don't want this for her. Fix our baby. And then in the book, Jesus actually comes and talks to the parents and the conversation starts off with Fix your baby. Jesus says to them, Fix your baby. But she is already exactly the way I chose to make her. And he asks them, do you think I make mistakes? And the answer is no. The answer to that is no. And Jesus then goes on to explain to them, hey, I gave you this daughter exactly the way that she is, not as a mistake, not as a punishment, but as a gift given in love. She is a precious gift to you that I have given you have given in love. And she is going to be an avenue of grace for you. And because I have allowed her body and her mind to be so special, I have made sure that her heart and her soul are special, too. And caring for her will be when you care for her, it will be like you are caring for me. Like it says in the Bible, when you care for one of the least of these, you are caring for me. And in caring for her, that will be your path to heaven. By taking care of this daughter that I have given you will be your path to heaven. And yes, there will be hard times, but that will only make the good times even greater. And it addresses so many of the fears and anxieties that parents have. And also, he also reassures them that, hey, I have known that this little girl was going to be yours long before you were even born. And I have been preparing you to be this little girl's parents for your entire life. So don't worry, don't be afraid that you don't have what it takes to take care of this child. I've prepared you for it, and I am with you through it, through all of this. And by the end of the story, the parents are then able to look down at their daughter, who's sleeping in their arms and say, wow, what a precious gift you really are. And they're able to rest in the baby's, able to sleep in their arms, and there's just peace. And it's a beautiful story, and it really spoke to my heart because all of the fears and anxieties that the parents were feeling in the book, those are my fears. Those are my anxieties. And the prayers that they were praying, God, fix our baby, that was my prayer. That was what was going through my heart and my mind at the time that I got the idea to write this, writing it, illustrating it, bringing it into being, was an extremely therapeutic and just life-giving experience for me. It was wonderful. But what I didn't expect was that my husband and my mom were always very encouraging. Like, Colleen, this is a great story. You really need to publish this. Okay? Yeah, but they're my husband, they're my mom. They're biased. I was like, okay, we'll publish it on Amazon. And I'll humor them, kind of a thing. We'll put it up there just to be able to find a way to actually have it printed. I didn't think anyone would actually read it.

Mike Capuzzi [00:12:17]:

Well, Colleen, hold on. Before we go there. First of all, I think what's amazing and enlighten me a little bit more so you woke up that night, you wrote the first draft just out of curiosity. And I know it's an illustrated book, so I want to talk about that too, but how much more work did you have to do after the first draft? How long did it take you to get to a point where it was the final draft that you wanted to illustrate?

Colleen Faul [00:12:40]:

The core story of it always remained the same. It was kind of just I had to tweak a few circumstances and grammar and how things were said. I worked on it probably for about a month, just from between the first draft, second draft, and a third draft. And then I let it just sit there for about a month. I kind of just sat and came back after a couple more weeks with fresh eyes and looked at it again. And mostly at that point, I was just kind of tweaking grammar or mike tiny little things. But the main core of the story stayed the same. And then I sent it off to I had, like, five different people that I knew edit it. I had my sister who was an English teacher. I had other friends in our family who just happened to be really great editors. They all looked at it and they had different input. And with that, we made a few minor changes. But it was like the core of it. The core from that first initial first draft really stayed true, which is another thing that was kind of surprising to me. I figured it would end up looking like something completely different by the end of the editing process, but it really didn't. It didn't change a whole lot, which was amazing.

Mike Capuzzi [00:14:00]:

Right now, it's an illustrated book, right? It's not just a couple of pages. The entire book is illustrated.

Colleen Faul [00:14:07]:

Yes, it is. It's about 32 pages long. And it's all pictures. I mean, words on pictures.

Mike Capuzzi [00:14:13]:

Did you do the artwork?

Colleen Faul [00:14:16]:

No, I can draw stick figures.

Mike Capuzzi [00:14:18]:

It's not one of those.

Colleen Faul [00:14:20]:

No. I'm not that talented. I ended up finding an illustrator. Her name is Aisha Hader, and she lives in the UK. She did a fantastic job. She illustrated the book for me. I ended up going on to a Facebook group that was a place for authors and illustrators to kind of meet each other there. And I posted, hey, I'm working on this book. Don't know if I'm going to publish it or not, but I'm looking for an illustrator. Is anyone interested? And I got a whole bunch of responses. But there ended up being kind of a weeding out process because, A, my book is definitely Christian themed, and there were a few illustrators who said, I'm sorry, I don't work on Christian books. And there were price negotiation things that kind of eliminated some people because they were outside of my budget. But Asia is literally the only person that I talked to. And after explaining what the book was, she says, I, too, am a Christian, and I would be honored to work on a book that honors Jesus. And once she said that I was like, okay, you're the person. That's it.

Mike Capuzzi [00:15:28]:

How was that experience? Because I've never written a completely illustrative book. I've done a couple of pages here and there, but how long did that take?

Colleen Faul [00:15:40]:

That took a few months. It took about two months altogether. But at the beginning, it was kind of Mike. I would try to write down what I wanted the page to look like, and then she would take my written words and try to give her interpretation of it and try to turn it into a picture. And then I'd be like, that's not what I'm envisioning. And there'd be a whole lot of going back and forth and back and forth, and it was very tedious. And then what I finally ended up doing was I started drawing what I called my bad sketches. I would draw these really horrible looking stick figure pictures of just basically kind of giving an idea of what I wanted the picture to look like and send that to her. And with that, she was able to like, oh, okay. And she immediately got that and started going way faster after that and much happier with, okay, this is so much closer to what I was actually envisioning. Once we got that, we figured out that stride about, I don't know, about a quarter of the book in, and then the last three quarters of the book went so much faster for that. It was great, and it was really exciting. I was excited every time. She'd send me a big surprise every week. It was really fun.

Mike Capuzzi [00:17:02]:

So, Colleen, before I kind of cut you off there, early on, earlier on, you were talking about what has happened since you published the book, which has now been about six months from the time that we're recording this. Right. So I'd love to hear what has happened, because you mentioned you just put it up on Amazon because you need a place to print it. But it's kind of grown a little bit more, hasn't it?

Colleen Faul [00:17:25]:

It has. And no one was more surprised than me, so I posted it on Amazon, and then I posted on social media, hey, I've written this book. And the people actually, gosh darn it, they started reading the thing, and they started leaving reviews on Amazon. And first I was shocked just that they would take the time to leave reviews. But then also what shocked me even more was parents of children with special needs who had read my book started reaching out to me. It was very moving and not anything that I had anticipated happening, but these parents is Mike hey. Our child has special needs. I relate so profoundly to what you have written in this book. Thank you so much for writing it. Do you have any other insights? And somehow, without ever planning to, I became this turned into a mentor for parents of children with special needs. And it started off with just that, with just parents reaching out. And now I've got Mike a website and people reach out to me through that and it's kind of official, but at the same time it's not. I don't charge for services or anything, but people do reach out to me and I walk with the through the process. I pray with them. I try to encourage them as much as I can. And I really encourage them to advocate for their child's medical needs with their doctors. I encourage them to trust their instincts as parents and to work with their doctors and try to get their kids the best care, because a lot of parents are just feeling overwhelmed whenever their child gets diagnosed. And it's really helpful to have someone who's kind of been where you are to kind of help just hold your hand and walk you through it a little bit. And that's what I do. And I didn't expect the trajectory of my life to go in this direction at all, but it has been beautiful.

Mike Capuzzi [00:19:27]:

Yeah. My guess is, again, we're talking just a matter of a few months, a, since you've had the idea, b since you published it. My guess is a year from now you're going to look back and I think there's going to be just an amazing path for you. I think there's a lot going on here and you have some real opportunity to make an impact. Which leads me to my next question, which I always like to ask my guest, is you're on The Author Factor Podcast. I always like to ask my guests, what does it mean to be a book author? What has described the impact? And I think you've already done that, but I'd love to hear you just kind of as we get ready to wrap up here, what does it mean to your family, to you, to the message you're sharing? To be a book author?

Colleen Faul [00:20:12]:

I think to be an author, I think it means that we have a voice, if that makes sense. I think to have a book that has so clearly spoken what is on our heart and how God has moved and the message that has been on our hearts. It's given me a place to write it and a place to speak it, even though it's not verbal it's in written form. I feel like I've been given a voice and I feel like I've been heard as an author, I feel like I have community. I feel like becoming an author gave me community. It somehow opened doors that I never expected to be opened. And it connected me with other people who are in throughout the world, who are in the exact same boat or who are needing to hear the same message that I needed to hear. So that's what it means to me as an author. It gave me a voice and it gave me community, and it means that I have a tribe, I guess. Yeah.

Mike Capuzzi [00:21:18]:

And again, given the topic that you're sharing, it's a worldwide thing, and you have such an opportunity to make an impact and help Moms and Dads and other family members who are going through some things. So, yeah, congratulations on it. Again, that's why I wanted to reach out to you. I'd love to encourage my listeners to check out your book, get your book, get it for themselves, or maybe a family member or friend who could benefit from it. So, Colleen, where's the best place to learn more about you, and where's the best place to get a copy of God's Precious Gift?

Colleen Faul [00:21:53]:

The best place is I have a website. It's called www.godspressousgift.com, and that's a place where you can find out all about me, about my daughter. You can purchase my book there, and any future books I have that are going to be getting published, you can purchase@godspressuresgift.com. You can also reach out to me if you're in need of a mentor if your child has been diagnosed with a condition and you'd need a mentor there. You can also buy my book on Amazon if you feel so inclined. But I definitely get the most revenue if you buy it through my website. So if you want to support the author, go to my website.

Mike Capuzzi [00:22:32]:

Very good. Well, we'll make sure we link that to your website. And again, Colleen, thank you for sharing your story, and I can't wait to see it. We'll stay in touch because I think you have some amazing things ahead of you.

Colleen Faul [00:22:45]:

Thank you so much. It's been so fun to be here. I've loved every second of it.

Mike Capuzzi [00:22:49]:

All right, Colleen. Thank you.

Colleen Faul [00:22:51]:

Thank you. Bye.