Something is Terribly Wrong
About the Guest
It was a one in a million stroke of bad luck--or was it? Molly Mutz, infant daughter of Rebecca and Jake Mutz, was born with an exceptionally rare and terribly damaging defect in the blood vessels supplying her brain. Jake and Rebecca tell how they waited to hear the diagnosis that could mean life or death for their firstborn daughter, Molly. Hear how they considered what God would have them do in response.
Jake and Rebecca tell how they waited to hear the diagnosis that could mean life or death for their firstborn daughter, Molly.
Bob: When little Molly Mutz was born, she had brain damage. The doctors told her parents there werefew options. They could choose to put her through 15-20 life-threatening surgeries, or they could make her life comfortable.
Rebecca: [Emotion in voice] If our time was that limited, then nothing was going to keep me from sitting next to her for the next 48 hours or however long we would end up having.
Jake: I just don’t see how, if you love somebody, you can’t fight for them. I really wanted to know what her personality is like.
Bob: This is FamilyLife Today for Tuesday, November 26th. Our host is the President of FamilyLife®, Dennis Rainey, and I'm Bob Lepine. We’ll hear today about the agonizing choice that Jake and Rebecca Mutz faced regarding the life of their daughter, Molly.
And welcome to FamilyLife Today. Thanks for joining us on the Tuesday edition. I know for us to spend some time, this week, revisiting the life and the home-going of your granddaughter, Molly—which all happened five years ago, this past summer—it is a painful thing. Yet, at the same time, it’s a reminder, for you, of the goodness of God, even in the valley.
Dennis: You know—He shows up when people hurt. We experienced Him in a very personal way, over a seven-day period, with the birth and death of Molly. We experienced that with our daughter, Rebecca, and her husband Jake. It’s a privilege to be able to share this with our listeners.
Bob: Pretty quickly, the doctors knew there was a problem. At first, the thought was it was something with her heart. Then, the concern was that it was something with her brain. As you started hearing this, you and Barbara knew you needed to get to Denver, where your daughter and your son-in-law were.
As we hear the story today, we’re going to continue to hear from Rebecca and Jake. We’ll also hear from your wife Barbara and you—and from Jake’s parents, Bill and Pam Mutz—as you guys continue to take us on your journey.
Rebecca: I think I was with my mom. Jacob came in; and he said, “The doctors want to talk to us.”
Jake: The neurologist was one doctor—the neonatologist, the cardiologist, and, then, our nurse—and I think, maybe, even a fifth person.
Dennis: The body language of all of them made me think, “I know where this is headed.”
Rebecca: I thought, “Okay, this can’t be good.”
Jake: “It doesn’t take this many people to give you good news.”
Rebecca: They walked us into this room. On the sign—it said, “Private Family Room” or something.
Jake: It’s like if you’ve ever had to fire somebody, and you don’t want to do that—that was the mental picture that I had right now.
Rebecca: They shut the door, and they explained what they saw on the MRI.
Barbara: When we looked at the MRIs, it was just so clear.
Pam: In fact, even today, I think, “Oh, I would really like to see that again—”
Barbara: You could tell that it was not normal.
Pam: —“the areas of the brain that were damaged.”
Barbara: There’s a vein in the brain that’s called the vein of Galen. In weeks 6 to week 11 of the pregnancy—so very, very early on—
Dennis: Probably, a microscopic bunch of cells—
Barbara: —something happened in that vein. Instead of it developing like it should have—a bunch of blood vessels all developed together in a clump.
Dennis: —but it determines how much blood the brain gets from the heart.
Barbara: When it’s repairable, it shows up in a child at six months or older. I think he even said two or three years old. They can go in, with catheters through the veins, and they can block some of those veins to restrict the blood flow.
Rebecca: It could take 10 to 20 surgeries—if she even survived surgery.
Barbara: When it shows up in a newborn, it usually indicates—from what we’ve learned—that it’s much more severe.
Rebecca: I think I asked the doctor, “What would you do?” He said, “Do you want the truth?” I kind of just wanted to roll my eyes at him and go: “Give me the hard truth. I just need it.”—you know. He said—he said, “You need to make her comfortable. [Crying] That’s what I would do. I would make her comfortable and just enjoy her while you have her.”
Jake: All of them said that they would just make her comfortable. I really didn’t like that euphemism. I kind of—part of me—wanted them to call it what it was—to let her die or just to stop fighting.
Rebecca: That was the worst thing I had ever heard in my life—
Barbara: You know, bless her heart—just sitting there—absorbing all that they were saying—was really, really painful.
Rebecca: —was to take her off life support. I just thought the world had ended. Then, I just didn’t want to be away from her anymore. I just wanted to be right next to her.
[Audio Recording from the Hospital Room]
Jake: Alright. Right now, it is about 11:00. I’m going to take the time to read another book to my precious little angel, Molly.
Rebecca: [In the background, speaking to Molly] Hi! Hi! Are you going to open your eyes?
Rebecca: If our time was that limited, then nothing is going to keep me from sitting next to her for the next 48 hours or however long we end up having.
[Hospital Audio of Jake and Rebecca]
Jake: Tonight, we’re going to read The Little Engine that Could.
Rebecca: Hi! Hi!
Jake: That night, I was talking with the nurse. She asked me what I thought about—what I thought about all of this. I talked to her a lot about: “I just don’t see how, if you love somebody, you can’t fight for them. You never know how well the surgery is going to turn out. You never know what could happen or what technologies could get developed later. Anything is possible. And anything is possible with God.”
Jake: The little train was carrying all of these wonderful things to the good little boys and girls on the other side of the mountain.
Jake: She very softly kind of talked through what basically that quality of life stuff would be—
Jake: All of a sudden, she stopped. She simply could not go another inch.
Jake: —her eyesight would be probably blind or, at least, legally blind. Her hearing, they said, was probably—you know, almost completely ruined. The part of her brain that controls the rest of her body, as far as her motor skills, was damaged.
She talked a lot about how a lot of parents are too selfish to let go and that, “Who are you really holding on for?”
Jake: Will you pull us up the mountain?
Barbara: Dennis spent a lot of hours on Saturday and Sunday—and I think Bill did, too, after he got there—on the internet. They talked to a different radiologist. She pulled out her textbooks about the vein of Galen, and she printed off pages out of her textbook for them. They were just doing research like mad.
Bill: We had the wonderful privilege—and this is really for Dennis and me—of contacting physicians—across the country—whom we knew—regarding her situation and circumstances and getting input from them to try and find or locate someone who might be able to make a difference, medically, if we could do so—or to know of some case or protocol, that had occurred, where there might be a significant, or at least some, percentage of hope.
Barbara: I think both of the dads—both of the daddies—felt like they were doing this for Jacob and Rebecca—to give them comfort and assurance they were making the right decision because I think they really wanted Jacob and Rebecca to know everything there was to know so that they could make the best decision they could make and have no regrets.
Bill: The constant response we got back was, “We know of no successful recovery from this condition—none.” So, from our standpoint, as grandfathers—that was somewhat bolstering because, all the more, we needed to be praying only for the miracle that God could work if He wanted to do it—which, by the way, He could do it in a nanosecond if He had wanted to do that.
Jake: The passenger engine is not the only one in the world. Here is another engine coming—a great big strong one. Let us ask him for help.
Rebecca: There were a couple of doctors that came into her room one morning. They don’t introduce themselves. They just come in, and they look, and they prod, and they feel. One doctor was like rubbing on her head, and looking at her head, and doing some funny things. I said, “Who are you?”
Dennis: We found ourselves, back in the same room, with one of the world’s leading radiologists—who had done more of these vein of Galen operations than anybody else.
Rebecca: They said: “She won’t have a great quality of life, but we think we could fix this vein. We can do the surgery that needs to be done and, possibly, have some sort of an outcome—good outcome.”
Dennis: He says, “I think we can fix your daughter.”
Rebecca: I thought: “Oh, really. So, are you like a miracle worker? Do you really—can you heal her? Is that what you’re saying? What are you implicating with this—‘We can fix it.’?”
Pam: What I was thinking is: “Just let Molly go be with Jesus. Just let Molly go be with Jesus.”
Rebecca: There was no guarantee that it was going to work.
Barbara: If there had not been any brain damage, then it would have made sense to pursue the surgery, even though, in his terms, it was “extremely risky”.
Rebecca: And she was so young. He would like to wait until she’s a little older—like a month old or two months old—before they do any surgery. She would not have made it that long, at all.
Bill: Rebecca really got to the point—she understood it, pretty early.
Rebecca: “I don’t want to do surgery. I would much rather hold Molly while she goes to see Jesus instead of being on some cold operating table with a doctor that doesn’t even know her.”
Bill: Jacob couldn’t let go. He was not doing his job if he let go, as a dad. This was his little girl, and he still needed to figure out a way to fix it.
Jake: The front of your brain is where your personality is—and that wasn’t damaged. That’s part of what made it hard—is I thought about: “Really, her personality is in there. I really wanted to know what her personality is like.”
Jake: Then she said to herself, “I think I can! I think I can! I think I can! I think I can!”
Dennis: Jake was being a daddy. He was trying to fix it, from the very start. You know what? He was being the perfect daddy.
Jake: At that point, I think both of us were ready—to let go—ready to get off of life support. I still wanted a second opinion from somewhere else—
Dennis: Jake, up until the end, was still wanting to call Salt Lake City.
Jake: —but, then, after that, I wanted to get a third, and fourth, and fifth opinion.
Rebecca: I think he didn’t want to see her die during surgery.
He wanted to just go ahead and take her off life support; but then, the other struggle was: “No! I want to push harder. I want to find the best doctor. I want to check with Philadelphia and with Boston;” but then, the other side of him wanted to just enjoy her and wanted to just let her go.
Jake: Faster and faster and faster and faster the little engine climbed until, at last, they reached the top of the mountain! Down the valley, lay the city.
Dennis: You feel like you’re descending into a valley. Just about the moment when you think your heart could not break any further, it would break in half again.
Jake: Here’s your little journal. I’m just going to read to you, my sweet angel, what I wrote when I first wrote in your journal, when you were still in mommy’s tummy—
Dennis: You know, you realize, “This is hopeless—”
Jake: —“Dear Molly, I am so proud of you. I love you so.”—
Dennis: —not that God couldn’t—God could heal.
Jake: —“Your mother and I have been praying for you since even before you were conceived.”
Jake: What our prayer was, at this point—first and foremost—that the Lord would bring complete healing to her—that when we took her off life support, she’d be totally fine. That would be a miracle.
Jake: —“We’ve asked the Lord’s blessing for wisdom in giving you toward your purpose—asked for patience in helping to raise and understand you.”
Jake: Secondly, if the Lord didn’t do that, that He would give us a sense of peace, and a sense of strength, and a tangible feeling of His presence as we walked through this journey.
Jake: — “Baby, we are so excited about your life! I ask forgiveness in the times I certainly will let you down. I hope to always be your great friend as you grow. I love you! [Emotion in voice] Love, Daddy.”
Rebecca: At some point, are we going to do a bath today?
Rebecca: They said we could give her a bath.
Pam: Say: “From what I hear, I’m getting a bath. I want to see what’s going on.”
Rebecca: Oh, this might help.
Rebecca: We didn’t put her in the tub, but we got to—
Barbara: So, you’re going to put a diaper under her head. What a great idea. That is a good idea.
Rebecca: Then poured water on top of her head to clean her off because she didn’t have her IV anymore in her head. So, that was good.
Rebecca: It’s warm. I’m so glad to wash her hair! She hasn’t had her hair washed ever!
Jake: No, that’s not true. I washed it with my kisses.
Rebecca: Yes, well.
Rebecca: We had moved her to her stomach—I think to wash her back off.
Pam: Ooooh! Her hair is going to smell good! I love the smell.
Rebecca: Molly would get really upset whenever we would move her. I think it just irritated her tube in her throat. So, anytime I was around, when that happened, I would always talk to her—
whisper in her hear—tell her I was there and: “Mommy loves you. Mommy and Daddy are here for you. We love you so much. You’re so sweet.” I would just say all of these things to her, and it always calmed her down. I don’t know if God just gave me a peace or what, but I just really enjoyed her.
Pam: [Reading from a book] With loving care, they wash her hair; while by her bedside, sits a bear.
Rebecca: [Emotion in voice] I would sit for hours and just look at her, thinking that we had created her. It was so amazing that we could do that. I mean, God is so cool! I would sit, and I would just—I would look at her, and kiss her, and I would talk to her. She would open her eyes, and she would look at us. Of course, I thought she was looking at us. The doctors said she was probably blind, which I ignored.
Pam: Oh, look how pretty it looks brushed!
Rebecca: But I just wanted to enjoy her because I knew that time was limited. I wanted to make the most of those days.
Jake: Her head is looking red.
Nurse: You can gently lift her head so that she—
Bill: Jacob said we needed to have a dedication service for Molly: “We want to make sure that we have dedicated her to the Lord.” Jacob’s a good delegator. So, he said: “Dads, I want you to work on this. I want you to kind of pull this together.”
Barbara: They put their heads together and came up with some verses and different things that they wanted to do.
Rebecca: My dad led it. He read some Psalms. Then, we sang a song.
Dennis: Turn your eyes upon Jesus. Look full in His wonderful face as the things of earth will grow strangely dim, in the light of His glory and grace.”
Barbara: We all got in there—and prayed over her and thanked God for her.
Bill: Really, it was an opportunity for everybody to verbally communicate that: “We have given Molly to You, Jesus.”
Rebecca: I just remember that being so—so sweet and so special.
Bill: It was a dear, precious time of prayer. There were sweet, sweet moments.
Rebecca: At one point, Samuel, my brother, asked if he could wash Molly’s feet. He started to cry. [Emotion in voice] He is weeping anyway, but he started weeping. He had a Kleenex® with him. He just held it next to his eyes. He just pretty much doused this Kleenex; and then, he just wiped her feet with the Kleenex, that was just wet with his tears.
Dennis: It was interesting—that evening, driving home, was not quite dark. I could see the Rockies. I thought, “Compared to where we’ve been, the Rockies are growing strangely dim.”
I’ve always been worshipful of the magnificence of those mountains and their beauty—and still am—but I’m going to tell you something: “When you’ve been in the valley, and you’ve been where God is and God’s near, that song gets it.”
[Song: Turn Your Eyes upon Jesus]
Dennis: I do think the baby dedication assisted Jake in letting Molly go. I don’t think he had let go, at that point.
Jake: I talked to my little sister, Lori, who’s the pediatric nurse. I know what her values are—they’re the same as mine. She talked about being able to let go and that she had often prayed for herself—that if she ever had a baby in a situation similar to Molly’s or something else similar—that she would have the strength to let go.
Pam: Dennis called Bill and me. He said, “I have a feeling Jacob’s going to have difficulty pulling the tubes out.”
Jake: I couldn’t think of that being strength. That just seems like the antithesis of strength—that seemed like giving up—
Pam: Bill said, “Dennis, I don’t worry about something until it happens. I think that he’s going to step up and do what he knows he needs to do.”
Jake: —but it is. It takes a different type of strength. It takes a quiet strength—a resolve. It takes a lot of faith.
Dennis: I think the rest of the week was one process of Jake trying to decide: “What’s the responsibility of a daddy in this situation—to fix it?” and, “Is it my failure because I haven’t fixed it?”
Jake: After I finished talking to Lori—Becca and I went to bed in the little room that we had there on Molly’s floor. Basically, before we went to sleep, we talked about that. I told Rebecca what Lori had said. That was helpful to her, and it was helpful to me to talk about it. Then, we prayed together before we went to sleep. I felt like we were together, then, and really sort of on the same page.
Dennis: It’s an innate responsibility of a man to care for the needs of his wife and children. Here we’ve got an issue of life and death.
Jake: I didn’t have peace about it. I didn’t have total peace about it. Logically, I knew that’s where we were headed with high certainty; but—emotionally, I guess—I wasn’t ready to do that.
Dennis: I wish I could trade places with Molly, and go on to heaven, and heal the wounds that are being sliced into Rebecca and Jake’s hearts. I would do it in an instant, but it is a gift that is not mine to give. God alone is the One Who gives and the One Who takes away. Blessed be the name of the Lord.
Bob: I know it’s hard to imagine what it is like to be in that valley.
I think, as you are sharing thoughts about it on today’s program, I’m thinking about the scene in the first Stepping Up™ episode that we’ve done for men—the first in the video series—where you share Molly’s story. Guys get a chance to see Molly’s handprints and footprints on the pages of your Bible.
I’m grateful, too, that Barbara took the time and your daughter, Rebecca, took the time—they sat down, and they thought deeply, and they thought carefully about the journey that God took them on, as a mother and as a grandmother, in the loss of a daughter and a granddaughter. They shared those thoughts with us in a book that they’ve written called A Symphony in the Dark, which we have recently revised and updated to include some of Rebecca’s thoughts, now—five years after Molly went home to be with the Lord. We have copies of that book in our FamilyLife Today Resource Center.
I’m thinking of people I know who have been through a similar valley. There’s a couple I remember who we went to church with, years ago, who had a daughter who was anencephalic. She was born and lived hours before she died. If you know folks who have been through this kind of an experience, you might want to get them a copy of Barbara Rainey and Rebecca Mutz’s book, A Symphony in the Dark.
We have it at FamilyLifeToday.com. You can go, online, to order from us; or you can call 1-800-FL-TODAY. That’s 1-800-358-6329; that is 1-800-“F” as in family, “L” as in life, and then, the word, “TODAY”. Ask about the book, A Symphony in the Dark, when you get in touch with us. We can make arrangements to have copies of that book sent to you.
Let me also mention that, on our website at FamilyLifeToday.com, there’s a link that says, “Subscriptions”. We’ve just added that recently. You can click there and sign up to receive our daily email from Dennis and Barbara Rainey—“Moments with You.” It’s a devotional for couples. There’s also a link to the “Marriage Memo”, which comes out every Monday morning. There’s a link to “The Family Room”—that’s our e-zine—that comes out twice a month, with articles about marriage and family in it. Sign up for the subscription that appeals to you, or find out more about other subscriptions available when you go to FamilyLifeToday.com.
Be sure to join us back again tomorrow as we’ll continue to reflect on the life and the home-going of Mighty Molly. That’s tomorrow on FamilyLife Today.
FamilyLife Today is a production of FamilyLife of Little Rock, Arkansas.
Help for today. Hope for tomorrow.
©Song: Turn Your Eyes upon Jesus
Artist: Lindsy Morton
Album: Acoustic Hymns, (p) 2009 Dean Sklig Music
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