John Fuller: No one wants to begin a journey with a detour, and no one anticipates tragedy along the way. But today on Focus on the Family with Jim Daly, we’ll hear about one mom’s unexpected and unwanted experience with suffering and how that shaped her faith.
Rachel Wojo: My prayer for Taylor has changed in that I stopped asking God, “Why?” I stopped asking God why because I realized I don’t want to know why. I may not understand why. But God, reveal Yourself to me. So my prayers went from, “God, why?” to “God, will You please show me how You’re working in this situation?” For me, many years, spending time with God was a check-off on the to-do list. And I finally began to understand that He wants so much more than giving us an answer to our prayers. He wants to give us Himself.
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Jim Daly: That is so well said. You know sometimes life is overwhelming, and if I could say, even for us Christians if we’re honest because we anticipate and expect our circumstances to go well, maybe even perfectly – to be easy, for us to be comfortable and be filled with the blessings of God. That’s what the quid pro quo equation could be in your mind. Especially if you’re trying to do your best and to love the Lord with all your heart. Somehow we think we deserve an exemption from pain and from suffering, for struggles and tragedy. But that’s not what the Bible teaches. Jesus very clearly warned us that this life will be filled with troubles and pain. And we don’t understand it all. We’re on this side of heaven. Some people may very much disagree with me, but I have seen enough of it. I have suffered enough of it as an orphan child. We can’t understand it all. We can’t explain it all. But as we’re going to hear from our guest today, God does have a purpose and a plan in this for our lives. And if we can see that and see that very clearly and trust the Lord regardless of our circumstances, somehow He can weave that into making you a stronger person and most importantly, stronger for Him.
John: Yeah, and that guest is Rachel Wojo. And we heard from her in the opening comment. She’s a Bible teacher, an author, a blogger with a passion to help people to know God more intimately, and to do so through prayer and Bible study. Rachel is married to Matt. They have seven children. And she’s written a very, very powerful book. It’s going to form the foundation of our conversation today. It’s called, One More Step: Finding Strength When You Feel Like Giving Up.
Jim: Rachel, welcome to Focus on the Family.
Rachel: Thank you so much for having me.
Jim: I am so looking forward to this discussion. That sounds odd given that it’s a bunch of tragedy that you’re gonna talk to us about and how you found God or remained with God in it. But I think this is one of the core things that we as the believing community – us that believe in Jesus Christ, we have got to get a better center point when it comes to what it is we really believe about our God and how much He loves us. And I know your story is going to demonstrate that. But the fact is you’ve had a rough road in life. In your book, you document the devastating collapse of your first marriage because of your husband’s infidelity and his loss of faith in God. As a result, you became a single mom for a while to your daughter. And we really wanna focus our conversation today on the story of Taylor and the many difficulties you’ve both experienced from day one. Can you share Taylor’s story with us?
Rachel: Taylor was born emergency C-section – my first child. And I really had no – you know, as a first time mom, you just don’t know about pregnancy. You think things are normal because you’re pregnant. And Taylor was born emergency C-section. She was in the hospital for four days. She was completely purple when she was born, and no one could really explain all of the details surrounding that. But we left the hospital with our little baby. And we were excited and happy. She was breathing on her own and looked very, very sweet and very normal for a newborn, and we were just excited.
Jim: So she came around…
Rachel: She did.
Jim: …After the bad Apgar score, which of course is the score the doctors gave her baby when it’s born. But it was 0, right?
Rachel: It was 0.
Jim: Because she was so oxygen deprived.
Rachel: She was. And we didn’t know the journey that was about to unfold. You know, it turned out that we battled with her eating. She just had a lot of struggle – couldn’t nurse her, had to bottle feed her, went through all types of formulas – I know there are many parents out there who can relate to all of this – went through many types of formulas. It was a science to feeding her. She really could only drink a little at a time. She had to be burped.
Jim: She had swallowing issues.
Rachel: She had swallowing issues. She would – you know, had eventually what was diagnosed as esophageal reflux where her muscle just did not close and she would lose everything that she just ate, you know, and you’re starting at ground zero again. So it was a challenge.
But she – we made it through that first year. And we knew she had some developmental delays. You know, things were a little slow as far as maybe her sitting on her own – those first year milestones of standing up or walking, but fairly normal. And anything that we would question, the pediatrician would say, “You know, she was oxygen deprived at birth. We don’t know how that’s affected her brain. And so we just have to wait and see how all of this plays out.” And we continued to just do the best we could.
At age three is when Taylor’s father and I separated. And so it became very difficult. Even more difficult, I realized that there were significant verbal delays. And I began to seek developmental assistance with pediatricians and as well as, you know, any type of educational delays and development. So we pursued a verbal – you know, she would only say a couple of words at age three. And some folks out there again will say, “Well, that’s fairly normal for some children,” you know?
Jim: Like, don’t be alarmed?
Rachel: Yeah, but I knew in my heart that there was more. I just didn’t know how to figure it all out. And about a year later we actually were sitting on the floor one day. And Taylor knew how to get dressed. And she knew how to get undressed as well. And I said, “Taylor, you need to put your socks on. It’s time to go.” And I walked away and came back to her. And she was still sitting there. And you know, like most three-year-olds, you think – your first thought is just, you know, “She’s being obstinate and stubborn.” And I got down and I looked at her in the eyes and I said, “Taylor, you need to put your socks on. We need to go. Put them on.” I walked away and came back. And at this point, I realized as I looked into her face, she looked at the sock – she did not know how to put her socks on anymore.
Jim: She had forgotten?
Rachel: She had forgotten what to do. And so we made it through that moment, but I just remember that gut feeling of something more is wrong. This is not developmental delay. There’s something more wrong. And so it took about a year before we received her diagnosis of Mucopolysaccharidosis.
Rachel: MPS. MPS is a lysosomal storage disease. So it is genetic. Both parents must have the same recessive traits. And when they do, essentially, you’re missing the enzyme that is necessary to break down all of the long-chain sugar molecules that you ingest. So when you eat food, your food is broken down into long-chain sugar molecules, and then the body chemically reduces those molecules. It’s – you know, results in a byproduct. And everybody’s metabolism works through all of that.
With MPS, you’re missing an enzyme that’s necessary. So in order to actually process those byproducts, it doesn’t happen when a child has MPS. Therefore they have neurological damage as a result. The byproducts attach themselves to the nerves and destroy the nerve system gradually. And so her forgetting to put her socks on was our first indication that was happening.
Jim: And again, people – putting this into context, you’re right in the middle of the separation pending divorce and all this is going on. And you’re going to carry that through as a single parent mom until you meet Matt. But eventually, you got the diagnosis?
Rachel: It was a journey, as most diagnoses are. They don’t immediately know what is wrong. But we did get the diagnosis, and it put everything into perspective, y’know?
Rachel: Now when they tell you the average lifespan is 10 to 15 years and your daughter is four years old, it rocks your world big time. You think about the priority of every day and the quality of life every day and just making the most of every single day.
Jim: Yeah, when Taylor was five – and this is the part of your book that I just – it almost sunk me, emotionally, because it was so touching. When she was 5 – I mean, I’m tearing up now as we start to talk about it – you had Michael, your second child. And this is with Matt, your second husband. What did Taylor say when he was born?
Rachel: She was so sweet. She stood by his little hospital crib at the hospital and said, “This is Michael. I’m a big sister.” And we had bought her the little shirt, you know, ‘I’m a big sister.’ And she was just, in that moment, cognitive of the fact of who she was and who he was. And it’s one of those moments that I just held in my heart because it would be not long after that that she would forget how to talk completely.
Jim: I mean, that was, you said, her last full sentence?
Rachel: It was her last full sentence as far as I can remember. There were other times where she would say a word or two. Her last actual word that I can remember her saying was ‘ice cream.’ You know, that’s pretty important – ice cream, I think.
Jim: But I – the heart of a child and the fact that she could no longer speak after that.
Rachel: It was very difficult. And she could sing like a little bird.
Rachel: She knew hundreds of Sunday School songs because we had these CDs and cassettes that she would listen to all the time. So it was a comfort to me that even when she could no longer speak, she could sing. There is a story that I tell in the book about how she sang “Jesus Loves Me” all the way through long after she had forgotten how to speak words. And it was just one of those moments where you’re, like, God is still in control. It’s still in her heart.
Jim: Before we leave from this part of the story, how is Taylor – what’s happening?
Rachel: Taylor is 20 years old, so she has exceeded the lifespan of 10 to 15 years. God has blessed us richly. She is not on oxygen. She’s still eating food by mouth. She is still walking with assistance. I think those are all things we all take for granted every single day.
Rachel: The last visit that we had to the pediatrician, just to put everything in perspective – she has lost a lot of weight. Her neurological condition is severe to the point to where it’s questionable if she would survive any type of surgery to have a feeding tube or anything of that nature. So Taylor’s pediatrician gave me his personal cell phone number and said, “If you need anything at all, call me.” So she’s very fragile. Um, you never know what God wants to do. You know, I could be sitting here saying she’s very fragile and she could live 10 more years. We just don’t know. But from a medical perspective, one would think that she does not have a lot of time left on this earth.
Jim: Well, again, I see your mom’s heart all over your face and your concern. And it is in God’s hands, isn’t it?
Rachel: It absolutely is.
Jim: And that’s something you have learned.
Rachel: He has done so much through Taylor’s life that I can’t believe that everything He has orchestrated to this point would not also include Him orchestrating every moment of the end of her life. And I think it is such a privilege to be able to walk with someone as they exit this earth and enter heaven. Like, what a privilege He has given to us.
Jim: What about the impact on the other kids? How do they respond to that? You’re speaking to many families right now that may have physical challenges with one of their kids or a parent. What have you observed in their ability to absorb this in the context of their faith and say, “Okay, where’s God in this Mommy? How come Taylor suffers?”
Rachel: We’ve had tough times. I will not hide the fact that our children have had nightmares. You know, they’ve seen Taylor experienced seizures, and they want to know what that means and why does God allow her to suffer. You know, they don’t shirk the tough questions, just like adults don’t. They don’t overlook it.
Jim: I mean, they’re living it.
Rachel: Exactly. But it’s crazy how you cannot out-give God. And I don’t mean from a financial perspective. I mean, when you completely devote your emotional and mental capacities to the Lord, how He uses that. And you even get to see it in your children. For instance, we – every year since Taylor’s diagnosis we’ve hosted a regional gathering for families in the area who have Taylor’s disease. And our children have embraced this. They don’t know anything different, you know? They’ve grown up with her being sick. And so it’s just a part of life to them. Taking care of her is a part of life to them. My 6-year-old was pushing her through the hospital on Monday. And it’s just normal to her taking care of her sister. She doesn’t think a lot about it. But it has given them an awareness for people who are suffering that I could never instill in them.
Rachel: I could never do that. God has given them a gift and an eye for people who need help. And so they just naturally open doors, hold doors open, see a need and fill it. It’s a very natural part of who they are, and it’s such a blessing to see that. They embrace this gathering, and they really love to be a part of it. You know, they make signs. The boys set up 120 tables and chairs for all of these families coming to this event. And it’s really cool to see how God just uses the disease to draw them to Him and to start to share their love for Jesus in a unique way.
John: Well Rachel Wojo is our guest today on Focus on the Family. And she’s describing the challenges of trusting God while caring for a daughter with a degenerative disease. And this seems like an appropriate message as we observe Sanctity of Human Life Week. And you can learn more about Rachel in her book, One More Step: Finding Strength When You Feel Like Giving Up. We have that available along with an audio copy of today’s program at focusonthefamily.com/broadcast, or call 1-800, the letter A, and the word FAMILY to learn more.
Jim: Rachel, um, that practical application of scripture – I mean, you have leaned into the Lord throughout the whole discussion. And in your book, One More Step, you talk about that. Psalm 88 meant a lot to you. Why, and what comfort would you give to the person listening who’s going through their valley, their shadow – what would you say to them about Psalm 88?
Rachel: You know, in Christian school you don’t learn Psalm 88. You learn the heavens declare the glory of God and the firmament showeth his handiwork. You know, you learn praise the Lord in the heavens. Praise Him in the heights. Praise Him all you creatures. But you don’t really – I didn’t, at least, learn that the Psalms are actually full of sad songs as well. You know, there aren’t just pray songs in there. There are some serious, sad songs in the Bible.
And David just poured out his heart in Psalm 88 and asks, “Why God? Why?” You know, the entire Psalm just really spoke to me at a time when I needed to know that it was okay to sing a sad song to God, that it was okay to go to God with my sorrow because I think so many of us believe that we have to have our act all together before we start praying. You know, we can’t just go to God and say, “I’m anguished. This is what’s wrong. This is – you know, how could You do this?” And just pour out our hearts to Him. And for me, Psalm 88 just really solidified that it’s okay to tell God that we’re hurting, and it’s a good thing, actually, to go to Him in honesty because it is only when we are honest that He can begin the healing process.
Jim: That’s so good for people to hear. You know, being a mom of a special needs child – now she’s 20, Taylor – what have you learned about forgiveness? You mentioned that in the book. And I want people to hear this. What have you encountered that has required you to be forgiving toward others?
Rachel: I think that one of the hardest places where I had to learn about forgiveness was in how people treated Taylor. As a special needs child, people don’t always understand – she looked very normal and looked very high functioning – bouncy, beautiful pigtails and just sweet and kind to everybody and all over the place. And some people didn’t realize that she was as mentally disabled as she was at certain stages. So they were mean to her. You know, they just didn’t respond well to her and actually said hateful things to her at times.
One lady I remember specifically parking her grocery cart right beside mine. And Taylor was sitting in the top seat. And immediately – I hadn’t turned my back for two seconds and Taylor reached over and grabbed the woman’s bread right off the top of the cart, squeezing it, you know, as tight as she could.
Jim: Well, it’s nice and soft.
Rachel: Yes! Who doesn’t want to touch soft bread?
Jim: That’s right!
Rachel: And the woman looked at her and said, “How could you do this? I just picked up” – you know, she really just went off on Taylor. And I stood there. I was so shocked for a moment I couldn’t say anything. And eventually, I collected myself enough to say she doesn’t understand what she’s doing. You know, I’m sorry that she did this. I’ll take the bread to the manager. If you could just get yourself new bread – you know, and there were many occasions like that. You know, one time I remember her grabbing a little girl’s pizza right out of her hand. You know, she’s just very tactile.
Jim: And everybody is thinking that’s just bad behavior rather than she’s not cognitive.
Rachel: Many times. And even – you know, children are more forgiving than the parents often. But it was difficult. I had to learn how to have a heart for people even when they didn’t see what was right in front of them.
Jim: Because of that experience and your ability to learn that forgiveness, what happens to a person – and there’s going to be many listening right now, we might be two of them, John – that struggle in areas of forgiveness? What happens when we don’t forgive?
Rachel: Well, not forgiving – I realized, you know, all of these little incidents that Taylor encountered, I would carry them like an albatross around my neck. And they actually wound up weighing me down. Holding those grudges and not forgiving people didn’t do anything to those people. I was the one who was suffering as a result of holding on to those unforgiving issues so tightly.
Jim: Hm. You know, we have covered a lot of ground about what the Lord has brought you through and your family. And I’m thinking of the person who’s heard this. And they’re wishing that they could have that attitude, that they could have that understanding, that they could have that faithfulness to trust the Lord even in their valley. But they’re struggling. And I’ve got to press you to say what would you say to them, and how would you encourage them? That if you had to wrap it up in a comment, in one pithy statement, someone who’s suffering for whatever reason and standing in front of you saying, “Help me. I see what God has done in your life, but help me” – what would you say?
Rachel: One of the statements that I hold onto dearly is God wants to do so much more than change our situation. He wants to change our hearts. And so when we take a close look at ourselves and say to the Lord, “Okay God. I want You to change my heart.” How often do we pray that, right? Oh, we pray, “Will You please work in this situation? Will You please change this circumstance?” You know, we pray for those things to be changed and for God to divinely change all of those issues. But when we realize that God wants to change our heart more than anything and give us a heart like Him, then that is when we have the courage and the strength to take one more step, and then one more step. And that is how we move forward and find the strength when we feel like giving up.
Jim: Rachel, what I hear in that is a commitment to His word. I mean, you talked about how much you memorized His Word, how much the Word flowed through you and how critical that is, whether it’s Psalms or Matthew or John or Genesis or wherever it might be. The fact that you know the Word and you’re committed to the relationship with God.
Rachel: I believe that church is important. Groups are important. Small groups, study groups – all of that is important. But I think that through my own journey, what I learned the most is that it is a personal relationship with God.
If someone wrote you a love letter, would you leave it on the shelf and never read it? And God has given us His Word, and it’s so very precious, and I honestly cannot wait to open it up every day because I need it so desperately. I need to hear from Him so desperately. And I just would encourage folks to get into His Word like you’ve never done before, even if you feel like you don’t understand what you’re reading, even if you feel like it’s not making sense, God’s Word always provides.
Jim: I mean, that is it. And so many people will say that sounds too simple or they won’t even pick it up and try. But I hope you do. If you’re in that spot where life is tough, start with God’s Word.
And I’d say another thing is let us put Rachel’s book into your hands – One More Step. There’s so many wonderful, practical pieces of advice in there from experience, Rachel, that you have learned in the tough ways, and to lean in to God even when you’re in that desert. And I am so grateful to you for putting that down in a resource that people can read and embrace and understand God’s heart for them in an even stronger way. Thank you again for that transparency. And the way that you trust God and – man, for your future, I just pray God’s blessings for you in all the good ways. Even with some difficult things that still lie ahead.
Rachel: Yes, sir. And thank you so much for having me. You know, I poured out two years to write One More Step, and I – you know, folks don’t really know that I grew up in a wonderful home. But you know, I grew up in the state of West Virginia. It’s not exactly known for turning out authors.
Very low literacy rate. You know, when you look at Gideon or Moses, I relate so well to them because you know they say, “Well I’m not equipped. I’m not qualified.” You know, that’s exactly how I felt. But God put me on this journey. He gave me the ability and the context to write One More Step, and all along, my whole dream was just to really be able to help people get into God’s Word, get connected and feel like they too can keep going even when times are tough.
Jim: Wow. And that is such a sincere heart. So much better than a New York Times author, let me tell you.
John: Well that is a really powerful conversation we recorded with Rachel Wojo a while ago. And we so appreciated her insights and her vulnerability in sharing such a painful story with us. I need to let you know that Rachel and Matt’s daughter, Taylor passed away at the beginning of this month. And her life reached many for Christ and continues to spread the story of God’s love for all. And here at Focus, we’ve been praying for Rachel’s family and we encourage you to do the same.
And we do have copies of Rachel’s book here at Focus on the Family. We’ll send a complimentary copy if you can make a financial gift of any amount to Focus today. And you can do so when you call 800-A-FAMILY or donate at focusonthefamily.com/broadcast.
Well coming up next time, you’ll hear about one couple’s near-death experience. And that had a significant impact on their marriage relationship.
Ryan Frederick: That eternal perspective came, but it took years to know that life is still short. And so we need to spend our moment doing eternal things and not just, you know, wasting it.
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