To Express Sympathy: Mourning with Those that Mourn

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Gratitude and peace swelled in my heart as I read through the many messages responding to my Facebook post about my daughter who was in the NICU for an unforeseen brain injury at birth. People’s cards and messages had a way of lifting my spirit; their love, articulated in various ways, meant a lot to me.

Now, several months later, a few experiences have caused me to reflect back on what people said to me during that time: my friend’s mom passed away unexpectedly and my cousin lost her unborn baby after a car crash. In both situations, I wanted to say something meaningful, knowing how much people’s words carried me through some dark days in the NICU.

When others are going through tough times and we want to express sympathy, we often feel at a loss for words. We want to say just the right thing, or at least not say the wrong thing.

Here are some principles I try to keep in mind when expressing sympathy to someone:

  1. Love them.
  2. Share their sadness.
  3. Be moved to compassion. Act. Write. Do something.
  4. Validate feelings, instead of telling them how they should feel or what they should think.
  5. Pray for help.

Love Them

Feeling genuine love for someone guides you to respond in the right way. Love is trying to put yourself in their shoes. Love is caring about them and focusing on them, wanting to relieve their suffering.

The Apostle Paul included “love unfeigned” as an important attribute when ministering to others (2 Corinthians 6:6). At the latest General Conference of the Church of Jesus Christ of Latter-day Saints, Elder Hugo E. Martinez shared how love was obvious when others brought potable water to him and his family after Hurricane Georges in 1998. He said, “Their service—in other words, their personal ministry—brought much more than drinking water into our lives. To every son or daughter of God, knowing that people are interested in and watching out for his or her welfare is essential… The love of Jesus Christ must be our guide if we are to become aware of the needs of those we can help in some way.” (“Our Personal Ministries,” October 2014).

In sum, love is the necessary starting point. It is what makes the difference.

Share Their Sadness

I think it’s helpful to look at Jesus Christ’s compassionate example in the scriptures. When Jesus came to two of His friends, Mary and Martha, who were mourning the recent death of their brother, Lazarus, He responded this way:

“When Jesus therefore saw her [Mary] weeping, and the Jews also weeping which came with her, he groaned in the spirit, and was troubled,

“And said, Where have ye laid him? They said unto him, Lord, come and see.

“Jesus wept.” (John 11:33-35, emphasis added)

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You might not always be moved to tears at the sad things others experience, but you can still share in their sadness. By so doing, you emulate Jesus. Incidentally, as members of The Church of Jesus Christ of Latter-day Saints (Mormons), part of our baptismal covenant is to be “willing to mourn with those who mourn…and comfort those who stand in need of comfort” as the prophet Alma described it (Mosiah 18:9, The Book of Mormon). This willingness to share in others’ sadness is part of the baptismal covenant because it shows commitment to follow Jesus’ example of compassion.

Be moved to compassion. Act. Write. Do something.

In the New Testament, we read that Jesus was “moved with compassion” which prompted Him to heal people of their sicknesses (Matthew 9:36, 14:14). Because He was moved emotionally, He was moved to action.

Andrew J. Workman, a friend of the Prophet Joseph Smith, recounted a situation when the Prophet’s compassion motivated him to act: “I was at Joseph’s house; he was there, and several men were sitting on the fence. Joseph came out and spoke to us all. Pretty soon a man came up and said that a poor brother who lived out some distance from town had had his house burned down the night before. Nearly all of the men said they felt sorry for the man. Joseph put his hand in his pocket, took out five dollars and said, ‘I feel sorry for this brother to the amount of five dollars; how much do you all feel sorry?’” (Teachings of Presidents of the Church: Joseph Smith, 2011, p. 460)

Jesus cares a lot about our response to others, especially in hard times. He counseled, “For I was an hungered, and ye gave me meat: I was thirsty, and ye gave me drink: I was a stranger, and ye took me in: Naked, and ye clothed me: I was sick, and ye visited me: I was in prison, and ye came unto me… Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me.” (Matthew 25:35-36, 40).

I so appreciated when people went beyond a “like” on my Facebook post about my daughter in the NICU. Emails, texts, cards, hugs, flower bouquets, babysitting, care packages in the mail – it showed me that people really cared. They didn’t wait for me to respond to “if there’s anything I can do…” They were proactively helping me bear my burden (Mosiah 18:8) such that I didn’t feel left alone in my grief.

Validate feelings, instead of telling them how they should feel or what they should think.

Jesus went through every trial, sickness, pain, and difficulty we would ever experience so that he could comfort us (Alma 7:11-12). In short, He’s been there and He understands. He does not minimize our feelings as part of providing comfort. Instead, He allows us to be sad and weeps with us. He knows that sadness does not necessarily indicate a lack of faith. One can grieve even with a hope of the resurrection and of all things made right. It is okay to feel emotion!

Linda S. Reeves, a counselor in the General Relief Society Presidency of the Church, shared this insight into God’s character: “Our Heavenly Father and our Savior, Jesus Christ, know us and love us. They know when we are in pain or suffering in any way. They do not say, ‘It’s OK that you’re in pain right now because soon everything is going to be all right. You will be healed, or your husband will find a job, or your wandering child will come back.’ They feel the depth of our suffering, and we can feel of Their love and compassion in our suffering.” (“The Lord Has Not Forgotten You,” October 2012).

In the case of Mary and Martha mourning Lazarus’ death, Elder Paul H. Dunn explained how Jesus didn’t lecture the sisters for their seeming lack of faith: “Now, who would know better than Jesus Christ that there was to be a resurrection so that Lazarus would live again? He didn’t just say to them, ‘Chin up, ladies. It’s only a few years before you see your brother again.’” (“Because I Have a Father,” April 1979).

In the Church, we find great peace in the knowledge that families can be together forever. It is a wonderfully hopeful thought to cling to when you have lost a loved one. But, saying a terse reminder that “families are forever” is rarely helpful to one dealing with loss, especially without loving validation of their grief. Personally, I’ve found some comments to be more comforting than others. Things that have been less than comforting to me include “be strong and have faith,” “read this scripture,” “it’s for the best,” and “it was his time to go – he’s in a better place now.” Even if those things are true, I think they come across as preachy, harsh, and insensitive. Instead, when people say understanding things like “take all the time you need to grieve” or “I am so sorry you are going through this” (not “I’m sorry you feel that way”) I feel greater love and comfort.

Pray for help.

When you pray for a person grieving, you help strengthen and comfort them in ways you may never know. Jesus Christ knows how to succor (help or “run to”) people better than anyone. He can provide supreme comfort, grace, and strength through the Holy Ghost, who is known as the Comforter. As you pray, the Comforter can also inspire you in ways to help that you may not have considered. You can pray to be filled with charity, Christ-like love, as you seek to understand and minister to someone.

I have often felt an added strength as I go about my day, especially during hard times when I know others are praying for me. There is a tangible support and strength that I have only been able to attribute to others’ prayers on my behalf. During that NICU experience, I received a note from a couple friends listing the specific things they had been praying for us, which was very reassuring. I had felt the influence of their (and others’) prayers even before receiving their note.

Conclusion

In the end, nothing we do or say will take away someone’s grief. But, our compassion does make a difference (Jude 1:22). We can show our compassion by mourning with those that mourn – through feeling love, sharing in sadness, acting in compassionate ways, validating feelings, and praying for help. By expressing sympathy in Christ-like ways, we can help others feel Christ’s influence. He will not leave us comfortless, and like Him, we can strive to comfort those around us.

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Helping Children Develop Faith in God

A year ago I attended a workshop on religious diversity. There were many different people there, such as Buddhists, Christians, Muslims, Atheists, and even people who didn’t know what they believed or what to believe. At the beginning we were asked, why did we come? What did we hope to get from this session?

Of the many answers, the one that touched me the most came from a man who said he attended the workshop that day because he wanted to know how to raise his children in terms of religion or spirituality. The question has stayed with me ever since. How do we raise spiritual children? How do we help children develop faith in God, and to make their own faith-based decisions?

Children look to their parents as examples for faith and how to live a faith-based life. I am reminded of the story of Enos in the Book of Mormon. He comes to a critical point in his life: he is deciding what to believe. He turns his thoughts to his father. He says, “I, Enos, [know] my father that he was a just man—for he taught me in his language, and also in the nurture and admonition of the Lord—and blessed be the name of my God for it” (Enos 1:1). Enos was grateful that his father taught and exemplified principles of faith.

I was teaching a lesson in church last month; the bishop asked me to lead a combined meeting at which the whole adult congregation would be in attendance. This was my chance to learn from the wisdom of everyone I worship with. I gave everyone a card with the following question:

What did your parents do to help you develop faith in God? 

All of their responses showed a gratitude for the spiritual foundation their parents gave them. With their permission, I have included some of the responses below.

  • My mother talked to us about God, took us to church.
  • My parents taught me the importance of prayer. They taught me that we speak to someone who hears us and listens to us.
  • My parents showed consistency in their faith. They had us read the scriptures every morning, pray in the morning and night, and spend time every Monday evening meeting as a family. This consistency showed me how important the faith was to them in a real sense. James 1:22 - “But be ye doers of the word, and not hearers only, deceiving your own selves.”
  • Had me go to repent in Confession, go to church every Sunday, be honest all the time.
  • Even when other things were going terribly, my mom made sure that we always read from the scriptures as a family. As a kid, I hated it, but now I really respect her for soldiering through.
  • I had witnessed my mom wake up early at 4 a.m. to attend church service. I saw her pray and sing along all day. I saw her example of treating others with kindness, and forgive those who took from her what was most precious.
  • Doing activities around the house that doubled as object lessons.
  • Personal interviews. Having formal conversations was really helpful.
  • When I was a child and throughout her life my mom used to go to church every morning before going to work. It helped me to develop faith in God.
  • My parents encouraged me to live the commandments and find out for myself whether the teachings of Jesus Christ are true. We held family scripture and prayer every night, attended church meetings every week, and my parents set a great example by living very righteous lives.
  • My parents made sure I was heavily involved in church activities, which helped my social life and self-esteem. I always attended EFY [Especially For Youth, a church summer camp], youth group, church, and service activities. It taught me that God loves everyone and I shouldn’t be so selfish. Mosiah 2:17 - “And behold, I tell you these things that ye may learn wisdom; that ye may learn that when ye are in the service of your fellow beings ye are only in the service of your God.”
  • My parents helped me by teaching me how to read the scriptures and how to pray. They prayed with me and helped me look for the answers God gives us.
  • I think the biggest thing my parents did to help me was walking past my parents’ room late one night and seeing my dad on his knees praying. I knew then, that if he believed it enough to do it when no one was watching, then I could try it too.
  • My parents liked me to be with them at their church. I do go with them still as long as I have time.
  • My parents-in-law invited some Christian friends to our home to share their ideas about God and sing songs and pray.
  • Fostering the desire to seek truth and understanding. Working through doubts in an open, honest way.
  • Shared with me their journey to the faith and issues they struggled with, supported me finding my own path and asking tough questions.
  • My parents’ true love between themselves, the great love and respect. They both told me over and over about Father and Lord and Savior and Redeemer, not only with words, but with deeds of true love and compassion for others, so I do the same with my children and grandchildren.
  • They let me choose for myself. Doctrine and Covenants 121:37 - “…when we undertake to … exercise control or dominion or compulsion upon the souls of the children of men in any degree of unrighteousness, behind, the heavens withdraw themselves; the Spirit of the Lord is grieved…”
  • They taught me the love of learning about everything: all religions and all points of view. This helped when it came to hearing about the LDS [Church of Jesus Christ of Latter-day Saints] and feeling the truth of it.
  • They taught me to love the scriptures by quoting them – sometimes humorously, but always respectfully – and by applying them to real-life situations.

How my parents helped me develop faith

How did my parents help me develop faith in God? They took me to church, they taught me at home, and they set an example of belief. They made sure I had the opportunity to attend church evening activities with others in my age group. I was given nice, leather-bound scriptures and encouraged to study them. We focused on Jesus at Christmas and Easter more than on the presents or colored eggs, and we focused on Jesus every day, not just on religious holidays. We have many pictures on our wall, all of family members, and included on that wall is a big painting of Jesus Christ. The focus was always on Him.

So, now it’s your turn. How did your parents help you develop faith in God? Please share your comments.

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Staying Mormon After Losing My Faith Part 3

I have also spent a lot of time trying to understand what others also go through when they experience a profound loss of faith. A couple of years ago I made a list of the reasons why I am able to stay active in the LDS church after losing my testimony and be happy enough. I share this list so that others can examine ways in which they might be able to help others who go through something similar.

First, I am able to express my views honestly in church. I live in Boston, which is an area that has more open-minded people even in the LDS church. It still took some personal effort to get to the point where I can say what I want to say during lessons, talks, meetings, and other venues and not feel a twinge of guilt that maybe I’m harming somebody who’s fragile. Because if I did not express myself, I would go crazy and I don’t think I could stay active and happy.

Second, my beliefs are not very set; they are still evolving. I know how much I don’t know and how much trust I place on various beliefs of mine. Some others who go through a major loss of testimony end up in a place where they know the church is not true. Other than considering that possibility, I never really came close to landing in that camp.

Third, I am respected by my ward leaders, my stake leaders, and enough of my ward members. There are probably people that think that I don’t belong in church because of the views I express, but if there are, they don’t go out of their way to make me feel like I don’t belong.

Fourth, I still feel inspired occasionally when I attend church. I also appreciate the opportunity to confront and consider perspectives that differ from my own. I am able to benefit and have my experience broadened by the perspectives of others. I believe that continuing to attend helps me in my personal growth.

Fifth, I have not been personally harmed by the church or church leaders. I know many people who have been, but that has not been my experience. Rather, my experiences with the church have been inordinately positive. For people who have been harmed by the institution or its leaders, I think it is especially difficult to maintain activity.

Sixth, I think that my presence in church is helpful to others. I am thanked all the time for the comments that I make in lessons, or when I express my beliefs during a testimony meeting. I think that my presence in my ward makes the others around me who struggle with the church feel more hope and camaraderie.

Seventh, I feel a commitment to the church. I chose to make the church a part of my life, and I think that I would feel a sense of personal shame for not holding up to a commitment I made. I don’t know how healthy this attitude really is, but I feel happy enough with it for now.

Eighth, I feel a personal duty to do what I can to make my community as good as it can be. That applies to my neighborhood and the city I live in and also to my ward. I want the church to improve. If I did not attend church, then I couldn’t help it improve or even feel justified in critiquing it. I want to do everything that I can to make it better. I wouldn’t be effective at making my church community better if I weren’t an active participant in it.

I want to conclude with sharing a little bit more of what I believe. I do not know that God exists, but I choose to believe that God exists. I have looked at the evidence on both sides, both scientific and experiential, and I choose to believe in God. Furthermore, I believe that this faith transition that I have gone through is part of God’s plan for me. I believe that God wants me to have this perspective so I can share it with others. I believe that the purpose of this life is to become better people—more loving, kind, compassionate, more understanding. In sharing my experience, my goal is to increase understanding of those who go through a major faith transition in the hope that they will find compassion and respect within their church communities as they navigate through their spiritual journey.

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Staying Mormon After Losing My Faith Part 2

The next thing that had a profound impact on me was that I encountered a supportive community on the internet.  I think I googled something like “how to stay LDS.” I ended up on StayLDS.com and at the time they had a link on their homepage to a Mormon Stories podcast discussing Stages of Faith. Stages of Faith is a book by James Fowler outlining common stages that people go through with their faith across essentially all religions. Of the six primary stages of faith that Fowler describes, I was currently in stage four and prior to losing my testimony I was in stage three. What was most significant to me was that there were future stages—this gave me a hope I had not felt in a long time.

I was feeling a lot of negative emotions during this period. I was upset at myself for having been so trusting when I was younger. I was frustrated at the LDS church because I felt like it was the church’s fault. I had followed the formula set forth for building a testimony and it failed me. Also, the church provided no help for me. I could talk to my bishop but that didn’t help me and beyond that there were no resources. I was both mad at and confused by my fellow ward members because they weren’t going through the same thing. It’s amazing how quickly your perspective changes. I would look at people and think how can you truly believe what you just said, but only months before I might have said the exact same thing and truly believed it. I think I also felt some guilt; in looking for a cause of my doubts, I started to blame myself, thinking that perhaps I had drifted away from God and maybe that’s why I wasn’t sure if God even existed anymore.

These negative emotions are indicative of Fowler’s stage four. While you’re experiencing it, it’s hard to imagine that there will be an end to it or a light at the end of the tunnel. Listening to this podcast and hearing the experiences of a couple of other people gave me hope that there could be a light at the end of the tunnel for me. I wanted to progress toward a stage-five type of faith where the negative emotions are mostly gone and I’m able to appreciate the beauty of any and all faith. Just knowing that this perspective existed made me want to cultivate it in my life.

It took time, but church gradually became different for me. Instead of attending and feeling both personal alienation and pity for so many others who were left to their blind faith, I started to see the beauty in the beliefs of others that I no longer shared. I also decided that I needed to participate more at church. I would share my beliefs during testimony meetings every three to six months and comment in classes more. This process was very gradual and every so often I would think about how church has been for me lately, and for probably three years straight there was steady improvement.

Over these years, I have also continued to try to understand what I truly do believe and what I choose to believe. I went through a period where I listened to a lot of Mormon Stories podcasts, and I found them very helpful to understand some of the difficult aspects of Mormonism. I was also looking for others like me whose testimony crumbled because of nothing in particular. This period of sorting out my beliefs helped me to not feel anxiety in church when people expressed beliefs that are different from mine. I now can explain clearly why I believe what I believe because I put in the time to sort it out.

I feel as happy as I need to feel with my relationship to the LDS church now. I’m an active, temple-attending member with an unconventional testimony.

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Staying Mormon After Losing My Faith Part 1

About five years ago I began a major faith transition. Prior to this I would have described myself as a fairly typical Mormon man. I was raised in the church but I didn’t really believe what I was taught, then around age 15 I began to read the Book of Mormon. I knew all the stories and my family had read through it together when I was much younger, but up to that point I had never really read it for myself. I was surprised by what happened to me as I read it. I frequently experienced what people commonly describe as “feeling the spirit.” For me, feeling the spirit was, and continues to be, a metaphysical sensation that I cannot otherwise explain. I concluded from these fairly frequent metaphysical sensations as I read the Book of Mormon that the Book of Mormon was the word of God. Based on that, I decided that Joseph Smith must be a prophet and that the church he restored, The Church of Jesus Christ of Latter-day Saints, was God’s church on the earth and its teachings were of God. This was the foundation of my spiritual beliefs. I studied and experienced more and my spiritual beliefs multiplied, but the foundation didn’t last forever.

When I was 26, I was talking with a friend one day about an LDS church policy, and I realized that I just didn’t accept that this policy was of God. When that realization hit me, I began some fairly intense introspection about what that meant. I realized that I wasn’t sure anymore about a lot of the beliefs that I had adopted including the beliefs that the LDS church was God’s one true church and that the Book of Mormon was what it claimed to be.

This began one of the most difficult times of my life, as I had no idea what I believed anymore. My foundation in the LDS church was gone and I didn’t feel sure of anything. I talked with my close friends about what I was going through. They all listened patiently and felt some compassion for what I was going through, but they didn’t have the fix that I craved at the time. I talked with my parents with similar results. I talked with my bishop and he told me that his wife had gone through something similar, but he didn’t have any real answers for me either. However, I felt like he cared about me and felt empathy for what I was going through.

I spent a lot of time trying to sort out what I really did believe. This process took months and years. The main thing that I came away with was that I would probably never feel 100-percent certain about any belief ever again. This perpetual uncertainty fundamentally changed me.

During this period of my life, attending church was the most difficult thing for me each week. I would be feeling pretty good about my spirituality and then I would go to church and feel crushed spiritually. Until then, church had been a place where I felt pretty comfortable; it had always been a part of my life and, in a way, it had felt like home. Now, after losing my testimony, church made me feel completely alienated. Every expression of testimony from others was like a dagger in my heart; I couldn’t relate anymore. These utterly unqualified professions of rock solid belief made me feel sad, both for the person who believed so blindly and for my former self who did the same. I yearned for people to actually say why they believed what they believed, but that is very rare in the LDS church. Culturally, Mormons want to state as firmly as possible that “I know . . . ,” but I wanted to hear “I believe . . . because . . . .” The former relies heavily on emotion, while the latter is based more on evidence or experience, which I longed for. For whatever reason, people at church tend to feel more comfortable sharing their conclusions rather than sharing the evidence and process of how they arrived at them. I would vent my frustrations to friends and family and they’d listen with compassion, but during this time the emotional costs of attending church were much greater than the benefits I was feeling.

I wanted church to feel better to me so I tried attending a different LDS congregation, but if anything, it was worse. I continued to wonder if I belonged at church. I kept going but it was difficult, and at that time I believed going to church shouldn’t be difficult. I think this was partly because the LDS church basically teaches that every person would be better off if he or she attended church. Even though it was miserable, if I was going to stop attending church, I needed to feel more certain that was the right choice for me.

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When Big, Bad Things Happen

On Memorial Day weekend 2008 Annie, Ben, Jack (aged 3), and Lila (aged 3 1/2 months) left Brooklyn for a weekend trip to North Carolina, Ben’s hometown. They never came back.

What happened isn’t quite as ominous as it sounds, but nearly.

In short, a CAT scan detected a large tumor in baby Lila’s brain; North Carolina became their home, and uncertainty became their future. baby in hospital bed

A year later, in 2009, I called Annie with some questions, and she answered them.

Do you ever consider what life would be like if this had never happened?

Certainly. Yeah. I mean, I don’t think What would we be doing at this exact moment?, but I do think about what it would be like if life had just kept going on.

I also wonder what it would be like if it hadn’t happened in Raleigh. I wonder what we would have done without the family support. I also think that both times we’ve lived here, it has been because of forces beyond our control. Both times we faced less than ideal circumstances and just kind of gotten stuck.

In short, yes, I’ve thought about it.

Was there ever a moment, especially in the beginning, when you were in denial about what was happening?

There was never a chance to be in denial. There was processing, but no denial. I thought, I can’t believe this is happening, but never This isn’t happening.

From the moment the resident in the emergency room came in with her attending, there was always something to do. There was a plan of action right away, and we had to follow it. I just thought This is what we’re doing, this is what needs to be done. I had what if thoughts, but I couldn’t think This is what we’re doing . . . but what if this doesn’t work. I literally couldn’t think both those thoughts simultaneously. I would think What if this doesn’t work . . . how much time do we have with her. . . . But, there were things to be done, and with that kind of thought process, if you’re thinking one, there’s no point to the other.

Tell me about when the resident came in with the attending physician.

We took her into the emergency room because of symptoms we’d noticed. She wasn’t focusing, and her eyes were bulging out. They’d always done this, but this was more, worse. I actually thought she’d lost her sight. I didn’t know why she wasn’t reaching for her toys, and when we drove her to the hospital she wasn’t looking at me, she couldn’t focus on me, and I thought she’d gone blind.

They did a CAT scan. They said it might be hydrocephalus. They said that it was fairly common, and sort of fit the symptoms. That’s what they were looking for.

So, they swaddled her in lead, and did the scan, and while we waited for the results, they only take about an hour, the resident doctor came into take Lila’s vitals. That was the last time we saw that doctor alone. When she came back in, she had the attending doctor with her. I don’t know if that’s procedure, or if she was nervous.

When she came back in, with her boss, I knew, on some level, that something was going on.

Although, if ever there was a time when I experienced denial, this was it. I had no idea what they were going to tell me.

What was it like when they did tell you?

Ben and I reacted very differently. Right away, Ben started to cry. Maybe you shouldn’t write that. I just sat and listened to everything until the doctor was done talking. I guess it’s surprising it wasn’t the other way around.

She said, “Well, we were right, it is hydrocephalus. But we found something else. There’s a tumor.”

Time stopped. The floor dropped out from under me. All those cliche things really did happen.

Then the doctor said, “There’s nothing more we can do for her here.”

That statement. I’ll never forget it.

We’ve had a lot of moments this year, but that first one, it’s indescribable. I can feel it, still, but I can’t articulate it. I just don’t have the words to give that moment the impact it deserves.

What was it like to tell people this news?

Oh, it was awful. I didn’t want to make that phone call. I wished anyone else could make that call. But, I needed to call my mother and tell her. I didn’t know she was driving at the time. I still feel bad about that. She had to pull over. I had her make the rest of the calls. I didn’t feel it was my responsibility to spread the word, but I knew I had to call her.

Ben called his mom while she was giving Jack a bath. She started to cry, and for a long time Jack associated that phone call and her sadness with Lila’s sickness.

How did you explain all this to Jack?

We kept it pretty basic. We explained that Lila was sick, and the doctors were going to help. We had many conversations about it.

Once, I tried to get more specific, I tried to explain what cancer was, but he didn’t really get it.

It just became part of his life.

What have you done over the last year to retain normalcy?

In the beginning, there was a plan for Lila’s treatment, but no plan for our life. We knew we were going to stay in North Carolina for her treatment, but we didn’t know where we were going to live, what would happen to the apartment in Brooklyn, who would take care of Jack. In the beginning I would go days without seeing him.

Eventually, we worked it out. Ben and I would take turns at the hospital, one of us would be there during the day, and then we’d switch off, and the other would be there at night, so both Jack and Lila could see both their parents every day. Julie (Ben’s mother) went to the hospital so Ben and I could be together, and be with Jack together.

We taught Julie and Janelle (Ben’s sister) to administer the chemo so Ben and I could go away for our anniversary. This was a struggle.

Why?

I had to trust someone to give my child poison, essentially. It was a challenge to enjoy ourselves, thinking about that, while we were away. But it was necessary. We knew, even though it would be difficult to leave, it had to be done.

We tried to keep life normal for Jack, and hospital life was normal for Lila. It is what she’s known for most of her life. For her, it is what it is.

For you is it what it is, or do you rail against what’s happened?

The day it happened, sometime within the first 24 hours, someone said to me, “I don’t know how you’re doing this. I could never do this.” And 24 hours before that, I suppose I would have thought the same thing. But if it happens to you, you do it, because there is no alternative.

You can’t resist what you have no control over.

Can you speak to the response you’ve gotten to Lila from the public, both near and far?

I’ve never been a church charity case before, so, it was a personal process to learn how to accept help. A friend told me people wouldn’t offer if they didn’t want to help, and when people offered, I should say yes. So, I had to learn to say yes. It wasn’t easy, but it was good for me, and it was good for Jack. Up until that point he had, let’s say, a small circle of trust. He was looked after by only a few people, besides Ben and me, and this year has loosened him up. He’s been watched by so many people, and it’s helped us both to trust others.

The thing is, it’s incredible.

Lila’s name has been on dozens of prayer lists. People of all different religions were talking to God, whoever their God is, on her behalf. A friend put her name on the First Presidency’s prayer list, so Lila was prayed for, by name, by the prophet of our church, The Church of Jesus Christ of Latter-Day Saints.

It’s been incredible, weird, and difficult.

What about this response surprises you?

It’s surprising how this little person has impacted people who have never met her. I got an email from an acquaintance from college who told me that Lila’s story changed her life. Until this point I’d only thought of how this had changed my life. I didn’t consider how it had changed other people.

We recently ran a 10K for brain tumor research, and I got a list of the people who had donated to Team Lila, and an old college friend had donated $100. We hadn’t been close since college, and he hadn’t mentioned it, and when I saw his name on the list–I don’t know how to describe that experience.

I guess I’m surprised, and moved, that people, so far removed, have been so affected. I don’t pretend to know what it means, but any positive that’s come from this, somehow makes this experience a little more worthwhile.

Has this changed the way you see service, or how you serve others?

Absolutely. I used to think that I owed so many people favors for all they had done. But it doesn’t work that way. I had a trial, people helped me. Someone else will have a trial, and I’ll help them. That’s the way life is.

My mindset has changed. When I hear that someone needs help, I don’t think, oh, someone else will handle this. I know now that it’s my responsibility. If we all considered the burdens of our brothers and sisters our own personal responsibilities, then everyone would be taken care of.

Lila is in remission. Do you see this as a miracle, or do you feel that this was the only possible outcome?

I think this is a miracle. The type of cancer, which is aggressive and pervasive, is rare. The location of the tumor in her brain is rare. That she had this at her age is rare. Everything about this is extraordinary.

After her first surgery, because it’s what we’d heard people on TV ask, we asked, “What are her odds?”

The oncologist said that he didn’t do odds. It was 100% or 0%. She survives or she doesn’t. It was the nature of what she had–it was really bad. I’m going to get into some medical terms here: she had a golf-ball-sized tumor in the back of her head, pressing against the brain stem. It was mostly calcified teratoma. There were also components of immature teratoma and the germ cell tumor, which is the kind of tumor that causes ovarian and testicular cancer.

The calcified tumor was so hard that, when the doctors removed it, it virtually peeled away from the brainstem, and they were able to get all of it.

Well, I take it back. That was in June, and we continued the chemotherapy through July and August. When they did the MRI in September, we were sure everything was fine, and the results would be good. We were cocky. If there was a time when I didn’t consider anything less than a positive outcome, it was before the MRI in September.

But, there was another tumor. The chemotherapy had addressed the germ cell tumor, but not the immature teramoma, which is what had grown back.

After being so certain in September, we were terrified for the MRI in December. Terrified. The day after the test, we were in for labs, and a nurse passed us in the hallway and said, so casually, “Oh, the results were all clear. Everything looks good.” It was amazing. She had given us, in passing, the best news we’d ever been given in our entire lives.

I mean, I would love to tell you that from the beginning I thought everything was going to be fine, that she was going to be fine. But, I didn’t.

Medicine is incredible. All the prayers and fasting–it was a series of miracles.

Since we did this interview in 2009, Lila has been in remission and will celebrate her fifth remission-versary this December 4th. She just began kindergarten in July, and spends her days doing gymnastics, drawing, catching bugs, riding her scooter, and playing with her older brother Jack, now 8, younger sister, Alice, and is waiting to meet her littlest sister, due in December.

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