But sometimes they can use help. So let me share four stories (and there could be so many more!).

Story 1: Marti O
The first day we walked into Highland, Marti O’Rear, the children’s minister, met us with her smile that can light a room. She said, “Ok, let me have her. When she’s here, she’s mine.” (Funny, I tear up a bit as I write this—21 years later.) She wanted to be sure that Diane could attend class and the assembly without having to take care of Megan. (For those who maybe don’t know, I was the church’s preacher. I got there at 6:00 and was busy until early afternoon.) Marti knew that our care of Megan was around-the-clock, that we got very little sleep, and that we needed help on Sundays and Wednesdays—but wouldn’t ask. I’ve had several parents of specially challenged children tell me that they have just given up on trying to attend Sunday assemblies because it’s too hard. The easiest place of all is home.

Marti had a team who worked with our daughter. They learned how to incorporate her into classes; and they learned how to give her special attention when she needed to get away for a bit (translation: when she started pulling everyone’s hair). As Megan’s health deteriorated, this team went through training to learn how to provide the care she needed.

What can I say? It helped us? Too mild. It blessed us? Yes, but not enough. It saved us? Bingo.

Story 2: Don B
As Megan’s health deteriorated, life became more complicated. The routine was 24/7 care: percussion treatments, oxygen, g-tube feedings, meds, etc. We wore down. And with the medical complications, she was no longer able to go to school often.

She continued having bouts with aspiration pneumonia which would send her to pediatric ER. Each stay could run up to tens of thousands of dollars. We tried to convince our insurance carrier that just a minimum of home nursing care—which would be a fraction of the cost of one stay in ER—could help keep her out of the hospital. Our case manager said to Diane, I kid you not: “If you were a better mother, you wouldn’t be needing this help.” I know, it sounds like something out of a Grisham novel. But it was our life. We rarely slept, we tried to keep Megan (and two sons!) well, and I tried to keep all my other responsibilities at Highland going. And on top of all that for a long, long time we fought our insurance company every step of the way.

Until Diane went to her prayer group that evening and burst into tears talking about what this case agent from BC/BS had said to her. It just so happened that one of the women in the group was married to a lawyer who was connected to people in high places in Austin (translation: Gov. Richards).

The next morning we got a call from a man who was very eager to provide whatever help we needed. He said that we were being assigned a new case worker who’d be on our side. Home nursing care began shortly after that. (Of course, this was only a few months before Megan’s death. It would have been nice a couple years earlier. But later was better than never!)

Parents of children with special challenges often finding themselves “fighting the system.” They are doing just what they ought to do: being advocates for their kids! They often meet resistance from insurance companies, school administrators, parents of other children at school (who complain that all the “special attention” is taking away from their son or daughter’s education), etc.

What Don did made life a little easier. But even more, it reminded us that we weren’t fighting for Megan alone. Our friend, our brother, was fighting for her, too.

Those at your church who have children with disabilities need other advocates. And let me say the obvious: they don’t need to fight the same battles at church!

Story 3: Clark and Marci
My mom (and dad) took care of Megan a week every year so we could get away. It was a sacrificial gift that kept our marriage together. Of course, it was an act of love. Megan was her granddaughter. But it was exhausting and, in her last years, complicated. (I remember the call from my dad in the middle of the night saying they’d had to rush Megan to ICU where she was on a ventilator.)

But there were those other 51 weeks. Among the many people from church who helped us were Clark and Marci. They went through training to be able to care for Megan overnight. For the last year of year life, Megan spent a whole 24 hours with this couple she loved about once a month, allowing us to . . . wait for it . . . sleep! (Also, to reengage with the boys and with each other.)

Story 4: Dickie and Becky
There were so many times in the middle of the night when we went knocking on the neighbors’ door. They knew what it meant: we were rushing to the hospital, and we needed to drop the boys off. It was up to them to figure out how to get Matt ready for school and to football or basketball practice, and to watch Chris until we could work out the next step. They always—always—received the boys eagerly, no matter what time it was. They became Chris’s “other parents”!

Like the Hebrews writer . . . “What more shall I say? I do not have time to tell about. . .” Kay, Stephanie, E, Gary, Maria, Judy, Vicky, Beth, Ric, Lauren, Lindy, Jayma, Bob, Suzetta, etc. (It’s dangerous to begin this list, because, again to borrow from the Hebrews writer, “there were others.”)

But these were the people who surrounded us. Even then, life was challenging—as well as exhaustingly wonderful. But I can’t imagine having made it without them.

So . . . if you have a family at your congregation who has a child or children with special needs and you’re wondering what you could do, ask. Tell them you mean it. Be prepared to push a bit. Without being pushy, of course. Let them know that you’d like to assist with meals . . . or doctors’ visits . . . or bills (in some cases) . . . or babysitting . . . .

Some of my favorite memories of worship include prayers, scriptures, and communion thoughts led by members of our church who are mentally disabled. They were asked to lead not because they’re mentally disabled but because they are a vital part of the family, people of deep faith.

It’s important to parents of children with disabilities that the church recognize the humanity and giftedness of their kids. These children are not just a project of the church; they are the church.

A child with disabilities is first and foremost a boy or girl made in the image of God. They reflect his glory. They are humans! So please, don’t put them in some parallel universe by calling them angels (or something similar).

I love Brett Webb-Mitchell’s insight in his moving book Unexpected Guests at God’s Banquet: Welcoming People with Disabilities in the Church:

“How then shall we look at, listen to, work, live, and worship with those whom society has labeled as disabled? On a television talk show a few years ago, the newspaper columnist George Will, whose son is mentally retarded due to Down’s Syndrome, spoke about the very human nature of his child. . . . Many people try to make those with disabling conditions, like mental retardation, either Holy Innocents of God . . . or evil incarnate as a child of the devil. Will said that his son is human, full of the same complex emotions, drives, and stressors as any other child. There are times that his son is joyful and spiteful, happy and sad, sharing and greedy, loving and hating . . . all in all, the child is human nothing more and nothing less. Maybe the greatest way to approach his son and others who have some serious limitations and wonderful gifts is as a human being.”

In his equally thought-provoking Dancing with Disabilities: Opening the Church to All God’s Children, Webb-Mitchell writes:

“In one church, after a chorus of people with mental retardation sang the anthem for Sunday morning worship, the pastor began talking about angels. He started by talking about the angels in the Bible—the angel who wrestled with Jacob and the angels who sang ‘Gloria,’ announcing the birth of Jesus. Then he compared the sometimes sweet, frequently off-key sound of the present chorus of people with mental retardation as being a contemporary ‘sound of angels.’ But by labeling them as angels, he inadvertently robbed them of the richness of being human and left them with the barrenness of one-dimensional, postcard innocence.”

Our daughter, Megan, was mentally disabled. The older she got (up to her death at the age of ten), the more physically challenged she became. As I often have said, she only said one full sentence that I can remember: “I’m Megan.”

Yet we were blessed with people who saw in Megan the full humanity of one who bears the image of God. She was a reminder that we must not define “fully human” in terms of abilities (or disabilities).

It’s also important that the church recognize the special gifts brought to the church by these children. We parents of specially challenged children understand well the life and writings of Henri Nouwen; we get why someone would leave the most hallowed circles of academic achievement to live among the mentally disabled. When Nouwen writes of his friend Adam and others in their community, it isn’t with sympathy; rather, it’s with admiration. He learned how to be human, he learned about giving and compassion from his mentally disabled brothers and sisters.

So how can the church help? I’m not asking you to put children with disabilities on a pedestal. But treat them like other children: see in them the image of God, learn about their unique gifts and temperaments, and invite them into the full life of the family of believers.

“[One Sunday] when I was nearly lost in grief and discouragement, I looked at a line of people waiting to visit me. I was exhausted from preaching and from grief, and I didn’t know if I had the energy for the conversations to come.

“Years have passed since Kenneth read those words to me, but they still carry a tremendous power in my life. . . . Kenneth expressed the values of the kingdom in his urgency and terse words unclouded by comment.”

(from Megan’s Secrets: What My Mentally Disabled Daughter Taught Me about Life, used by permission)

Finally, this thanksgiving by Webb-Mitchell to the children with disabilities in his life — those with Braille pads, wheelchairs, hearing aids, autism, mental retardation, etc.:

“To all these people, and others like them, I say:

“You teach us the virtues of constancy and perseverance.

“You teach us patience.

“You teach us hospitality, hosting our laughter and tears.

“You challenge our assumptions about what life is, and what living with others in Christian community is.

“You are crossers of borders, showing us new borders we never knew the church had.

Megan

“You engage us in fitful acts of imagination, teaching us that imagination and creativity are skills and disciplined crafts learned in church.

“You teach us of the unpredictability and undomesticated nature of God’s love that rules this world. There is hope.

“Finally, you teach us that we depend on you, as you depend on us, bearing on your shoulders, and embodying in ways too magnificent for our senses to behold, the church, the body of Christ, as perhaps God means it to be. Thanks be to God for these politics of the body of Christ, which institutes our good.”

I had that title for 10 years. I know I am still Megan’s mom, but many people don’t know me anymore as Megan’s mom. They know me as Mike’s wife, Chris’s mom, Matt’s mom, Mrs. Cope (their teacher), Mimi… It seems like a lifetime ago, but I am still Megan’s mom.

Those 10 years were some of the most exhausting, formative years of my life. Megan had many challenges in her short lifetime. She had bone anomalies and mental challenges which caused her to develop slower physically and mentally. But she was a happy, fun-loving ball of fire! She never stopped. She was the energizer bunny! She didn’t sleep, which means we didn’t sleep. We were exhausted!

Megan taught me to live for each day. I learned that lesson from the very beginning. I could only think of how to survive that day. I couldn’t worry about the next day. Without realizing it, she was already preparing me for the journey I would have to live out without her. You see, walking through grief is a one day at a time journey.

I experienced grief at so many different levels with her. I grieved early on for the “normal” daughter I would never have. And, yet, I couldn’t picture Megan any other way. I loved her for her.

Because she was so all-consuming, when she left us, my life took on a dramatic change. My life consisted of taking care of her 24-7. I had three sheets with single spaced instructions on how to take care of Megan posted inside our kitchen cabinets. I was so afraid something would happen to me and no one would know how to take care of her. She had several medicines, a feeding tube (the last couple years of her life), percussion treatments, asthma treatments, etc. (I realize Mike could have taken care of her alone, but I was the one who usually took care of most of her medical needs.) So, when she was gone, it was so very different.

I spent hours just sitting. Chris was two years old at the time. I plopped him down in front of videos and sat. I’m not proud of that. But I couldn’t breathe. I couldn’t think. At night, I would cry for hours in the closet. I tried desperately to hold it together until Chris and Matt were asleep in their beds and then I would cry. I felt as though my arm had been cut off. I felt as though I was in a dark, black hole. There was no light. I didn’t realize how much despair I felt until I was listening to the news one morning and heard about the Oklahoma bombing that killed so many people. I remember thinking I wished I had been in that building. And then I remember thinking that I couldn’t believe I thought that. Of course, I didn’t want to leave Mike or our children. But, at that moment, I realized how heavy my grief was and it surprised me.

Not long after that, Mike was asked to help lead a spiritual retreat in Switzerland. I did not want to go. I know that is hard to believe. Who wouldn’t want to go to Switzerland! All I wanted to do was stay cocooned in my house away from everyone and everything. But I went. This trip became a healing balm for me. I know you are thinking this came from all that time in scripture and prayer. Although I’m sure that helped, it was more a near-death experience for me. At least, in my memory it was near-death; Mike might tell it a little differently.

While we were in Switzerland, Mike and Darryl Tippens led us through a morning of scripture and meditation. Then they would send us off in the afternoons for contemplation, fun, rest, whatever we needed to help be renewed. We would set off for hikes every afternoon with several from the group.

One particular day, we reached a part of the path that was full of snow. In fact, there was no path anymore and there was a sign with red tape on it. Now, I was with a group of very smart people. But I soon realized none of them had any common sense, except for me. I insisted that the red tape crisscrossed on the sign was a universal message that meant stop. My adventurous group didn’t want to believe the sign. My choice was to turn back and walk back on the trail by myself or go on with the group. I did not want to be by myself, so I trudged forward. We walked on guessing the direction we should go. We were finally close to the top of the mountain and realized we would have to climb up the side of the mountain to get to the top. I was to go first. I placed my hands in the snow and my feet. Then I froze. I couldn’t move. I was so afraid I was going to fall to my death. And then I prayed, “Please God, don’t let me die on this mountain.” That was a moment of epiphany for me. At that moment, I knew I really did want to live. I did make it to the top of that mountain at which time I sat down and cried like a baby. I cried because I was alive and knew that my life was going to go on, even without Megan.

My grief journey began in a very dark hole with no light. Little by little tiny specks of light broke through the darkness. Those were the moments that I knew I might be ok someday. My moment on top of the Switzerland mountain was a tiny bit of light breaking through for me. Later, I began to feel as though I had parts of days with actual light. Now, I walk in the light for the most part. As I’ve read all the comments on Mike’s blog the past couple weeks and as we get to walk through grief with friends, I find myself revisiting the darkness. But it is never as dark as it was for me those first few years. I walk in the light, enjoy my family, and long for the day I will be with my sweet Megan again.

We live with grief. Life doesn’t turn out the way we expect, and we suffer the loss. The health we expected into old age is suddenly lost. The child we thought was “normal” turns out to have special challenges. The teenager we love more than life makes destructive choices. The job we worked hard for is suddenly lost in a downsized economy. The marriage we thought was perfect turns out to be wearisome. The one we love so much dies. Rachel keeps weeping for her children.*

The years roll by and grief changes. But it doesn’t leave. And sometimes it sneaks up and bites us unexpectedly.

Long before I’d ever heard of Dick Hoyt, Megan was my frequent companion as I trained for marathons. She loved the feel of the wind and the up-close view of the outdoors. As I ran and pushed, she clapped her hands, sang little bits of her favorite songs, and would occasionally yell, “Hey, I’m Megan!”

I didn’t know how much I missed those running experiences together until ten or eleven years after her death. On the Sunday that our congregation is full of parents dropping off children at college, I took the stroller (which remains in an honored place in the garage) as a prop to talk about the challenge of letting go.

But in both services, the moment — the MOMENT! — I touched the stroller, I melted down. Through the years, I had some emotional moments while preaching. But never like this. The memories were just too strong.

Megan's stroller

What I’ve learned about grief, though, is this: it’s the only way. I can’t ignore it; I can’t set it aside; I can’t pretend. I must grieve my way through the sorrow and the loss. Painful as it is, grief is a gift—a part of the healing process.

It allows me to remember; it forces me to remember how strong love was and is; it slowly—slowly!—allows me to imagine a new future. And it keeps me dependent on God, eventually looking back over the many miles and realizing how true the words of the Psalmist are: “You turned my wailing into dancing; you removed my sackcloth and clothed me with joy.”

This is not a naive, Pollyannaish joy. This is the joy of those who have known deep loss, who have wept the tears of Rachel, who have lived in friendship with others who allow the balm of healing to slowly work (and who are themselves part of that balm of healing), who have been turned by God back to life in this desperate world, and who have learned to hope.

- – - -

*See Jeremiah 31:15; Matthew 2:18. I write earlier in the chapter that Rachel is the “patron saint of all those who have lost a child, all those who’ve suffered greatly, all those who think God has forgotten them.”

Robert Plant with his son

But perhaps no song spoke for me more than “Tears in Heaven.” Eric Clapton lost his four-year-old son, Conor, in 1991 when he fell out the window from a 53rd-floor apartment in NYC. Clapton later spoke about his sorrow in the following days: “It becomes like someone else’s life in a movie. I went into shock. It felt like I shut down . . . .”

Equally moving is Clapton’s “The Circus Left Town,” about his last day with Conor before his death:

For a long time after Megan died, movies just weren’t safe for us. Grieving parents are raw, tender. Our emotions can run from slight joy to sobbing quickly. In fact, it’s dangerous to be in any public place for a while. Some parents find they just can’t be at church for weeks or months. It’s not that their faith is weak (though it may well be shaken); it’s that they can’t control their emotions. One line of one song could send them over the line.

Still, a huge part of the healing process comes from the power of music, art, and literature. We find there expressions of true grief (not the formulaic kind of grief that gets doled out so often) and of hope.

We have survived by friends who supported us. But the healing community was much larger. So, my special thanks to those I’ll never get to meet: Wendell Berry, Henri Nouwen, Anne Lamott, Pat Conroy, C. S. Lewis, Handel, Eric Clapton, John O’Donohue, J. R. R. Tolkien, Horatio Spafford, Nicholas Wolterstorff, John Claypool, etc.

But then their lives go on. And ours don’t. We get caught in a black hole where the rules of time don’t seem to apply. We move from numb to angry to sad to hopeful to numb to desperate to . . . . Well, you get it. It’s a bit of an emotional merry-go-round.

And as their lives move forward, as they return to their jobs, as they await summer little league, as their kids move on, we fear that they’ll forget.

family photo with all five of us!

An important part of the grief process for families is to build their own memorials. It’s not uncommon in the beginning days of loss for sorrowful parents to turn their house into a kind of shrine built around their son or daughter. That’s an attempt to say “she lived,” “this is what she was like,” “we won’t ever forget her.”

But eventually, shrines may not be helpful. For, as hard as this is to hear, life must go on. I don’t say that flippantly. I had many days, months, perhaps years, when I wasn’t sure it would go on.

But it does. Wiser in some ways; sadder in many ways; even hopeful in other ways. And this new existence recognizes that life cannot be built around the one who has died, though they remain a vital part of who we are. As an example of how tricky this is, most parents who have lost children stumble on the new acquaintance who asks, “How many kids do you have?” I usually say, “two boys.” But a part of me wants to say, “three—two sons and a daughter—but only the sons are living.” (And I still say this at times, depending on who’s asking and the circumstances. But usually the former answer fits the occasion.)

But even though shrines may not always be helpful, memorials always are. They provide us ways of keeping the blessing of our son or daughter alive.

Here are some examples of our memorials:

the divided door into Megan's room

2. Anniversaries. For many years after Megan’s death, we shared a birthday cake on August 26. And we invited friends to come over on November 21 (the anniversary of her death) to share “Megan stories.” On the first anniversary of the death, friends held a special service. One, a gifted writer, had authored a piece about her influence in his life; another, a gifted pianist, had composed a piece in her honor.

3. Acts of hope and thanks. Part of what we do is remember that grief will not have the final word. So for fifteen years, we gathered with others who’d been especially close to Megan at her grave at sunrise on Easter morning to read part of 1 Corinthians 15 and to give thanks for her life. (Sadly, we haven’t been able to continue the tradition the last couple years because I’ve been speaking out of town.) Also, for about ten years, we would take roses by her grave on Valentine’s Day. It was a way of remembering how she embodied God’s love for us. And, of course, Megan’s stocking still gets put out at Christmas.

Though we need to weep your loss,
You dwell in that safe place in our hearts
Where no storm or night or pain can reach you. – John O’Donohue

Now, this is the most important part of this particular post (as is usually the case!): your comments. Could others who have lost children and grandchildren tell us about your own ways to remember? What celebrations, what symbols, what memories around the house have helped you honor and remember your child or grandchild?

with my little brother

When we finally got to their house, one of Pam’s relatives said, “He’s back in the bedroom waiting for you.” As I walked in, Randy gave a huge, first-recognition smile, then one second later collapsed into sobs.

I assured him that no one can know. It’s a private club of grief. No member hopes for more members. We don’t recruit.

Some of the things Randy has written through this experience are among the best things on grief I’ve ever read. (More of their story is included in my sister-in-law Pam’s book, Jantsen’s Gift: A True Story of Grief, Rescue, and Grace.)

I asked Randy to write something for this series. Here is how he describes the persisting sense of loss (and the eventual return of a new life):

On June 16, 1999 a part of my body left this world. Actually, it was my 15-year-old son that left, but as I later described it to a friend it was much like losing a leg.

The early days were so intensely painful that thankfully something kicked in that put me in a fog – a place in the universe that I didn’t know existed. Time didn’t exist, I didn’t feel hungry or notice the sun come up. I heard few voices.

Actually some of the hardest parts of these first days and weeks were trying to get my mind to kick in. As soon as I tried to move back into “this world” a breaker would trip in my mind. This world didn’t make sense without my “leg.”

After an amount of time, perhaps 40 days, the open wound healed over, but the pain was just as intense as ever. I had to sit up in bed and think about how to live life without my leg. I had to get up, get in the shower, and somehow go back to work.

I realize now how awkward it was for my friends when they saw me in those early days. Do they say something about how good I looked when I obviously didn’t or should they just ignore it, not knowing what to say? Most chose the later.

I’m still not sure how I did it, but I managed to pull it together and make a meager effort to get through a workday, although by the time I got home I was exhausted. It took so much more energy to get through the day without my leg.

Jantsen Cope pushing his cousin Megan in her stroller

The hardest part of my new life was accepting that I would never have my leg back. I learned to get up, get out of bed, even learned to run without my leg, but it was never and will never be the same.

Actually, it would be easier if it were a leg. People would see my loss is still there. They would know my leg isn’t growing back, that there are days when I’m mad that my life is hard and wouldn’t question why I am emotionally drained and ready for bed at 9 p.m.

I like life again and some days even love life. But when it is over please enjoy thinking of me in heaven reunited with that which was lost.

“I’m so sorry. How long ago did she pass away?”

“Sixty-two years ago,” the woman replied.

used by permission

As I’ve spoken about grief and loss in many places, I’ve heard amazing stories of people who are now a decade, two decades—even many decades—down the road from their grief.

The pain is different. It isn’t as intense usually, thankfully. But it isn’t entirely gone, either. There is still a nagging sense that something is wrong, that something is missing.

David Wolpe describes well the process of healing:

“When we experience loss, a hole opens up inside of us. It is almost as if the loss itself plows right through us, leaving us gasping for air. We bleed through that opening, and sometimes old wounds are reopened. Things we thought were safely inside, patched over, healed, prove painful again in the wake of the new pain.

“Very slowly, the immediate agony subsides. Around the edges of that opening, things begin to heal. Scar tissue forms. The hole remains, but instead of allowing only a constant stream of emptying, it begins to permit things to enter. We receive some of the love and wisdom that loss has to give us. Now is when loss can have content beyond the ache. This is the time to create meaning. Pay attention to what comes in that open space. Nothing can make the pain go away. Making loss meaningful is not making loss disappear. The loss endures, and time will not change that truth.”

Slowly, slowly we begin to see ways in which our losses can be formative. If we don’t allow ourselves to become withdrawn and bitter (all too common), we can find ourselves becoming more compassionate and more centered. We realize that much of what occupies our time and worry just doesn’t matter all that much. We reach out to others. We learn the skills of friendship. We become more dependent on faith and our faith community.

But trust me on this: no parent who’s lost a child forgets. If you mention the child (a story, their birthday, the anniversary of the death), you will be a cherished friend. And if you have a new friend whose child you never knew, ask them to tell you everything about him or her. Ask to see pictures. Your friend will need you to know that child (in most cases) in order to let you into the deep places of their heart.

And trust me on this, if you’re a parent who’s recently lost a child: life and joy will re-emerge. One day you’ll realize, without warning, that you just laughed at something funny . . . that you were whistling a joyful tune . . . that you are looking forward to the day. You may be surprised and even feel guilty about it. “Does this mean I’m forgetting my child?” Oh, no. You won’t forget. And there will be plenty more sorrow-filled days ahead. (Grief has a way of looping back around for repeat visits.)

But time does help. You will, with the help of God and friends, survive!

What do you say? In the previous post, I encouraged grieving parents to receive everything as a gift.

But that’s not easy for them to do—especially at a time when they are confused, sad, and uncertain about their own future. (Who envisions their own future without their kids in the picture somewhere?)

Let me start with what not to say:

1. Do not — repeat! — do not pretend to speak for God. Keep your theology to yourself. If you think God needed another little flower in his garden, please don’t share that saccharine image with the parents. Trust me: it won’t help. (“God ought to get his OWN flower” would be a likely unspoken response.) Don’t say:

“Everything happens for a reason” (I heard this a lot)
“God is in this”
“We just have to trust that God’s doing something”

Please—this particular blog post isn’t the place for me to try to respond to these theologically questionable statements. From a merely practical side: these comments won’t help! When a child dies, everything is delicate. Don’t take a chance on tying God to the loss in ways that God hasn’t specifically told you to. The Christian conviction is that God is with us in our loss. He grieves, too. But the parents will have to come to know that through the dark valley of experience. It’s also true that God will “use” (that needs to be unpacked, I know) even this loss for his purposes. But again, this is something the ones in grief will have to recognize in the rearview mirror someday.

2. Do not attempt to diminish the pain.

“At least you have other kids.”
“At least it wasn’t like losing an older child.”
“At least she isn’t suffering any more.”

Rule of thumb: Don’t say anything that begins with “at least.”

3. Do not tell them you understand. Ok, if you’ve lost a child perhaps something like, “Our stories are so different, but they overlap. And as one who understands the pain, I’m so very sorry.” But other than that, don’t do it! The parent may come back and point out that you understand something about suffering. Great. But let the person in fresh grief make that connection.

4. Do not oversell the future. God will one day make things right. But this is not that day. As the writer of Ecclesiastes knew, there is a time to weep. This is that time.

So . . . what do you say? Here are some ideas:

- Nothing. Seriously, you don’t have to say anything. A nod, a hug, a tear—these are tomes of love. I remember an older woman putting her hand around my neck, kissing my check, and nodding. Her eyes were leaking. She spoke not one word, but all these years later she’s still comforting me through that moment.

- “I’m so sorry.” Less is more. This is enough: you’re sorry, you hate this for them, you’re with them.

- “I will be with you.” The fear is that everyone will rally around the funeral and bring chicken spaghetti for a week and then return to their lives and forget that your grief has just barely, BARELY begun.

- “I will never forget her (him).” Saying something about the child means that you will miss them but you will NOT forget them. We need that. (Just last week, a man who’s in his mid-40′s told me a Megan story from his college days—a story I either had forgotten or never knew. I felt like a little bit of her came back to me.) Eventually, this is something the parents may want you to explore more. What do you remember? What did you love about the child? What stories will stay with you?

- “I’m praying for you.” Good! You can work out all your theology in prayer. But the parents just need to know that others will be praying for them when they feel prayer less.

I’m guessing some will look back and wish you could take back some words you’ve offered from the past. It’s ok. We all learn as we go. I offer these suggestions not as a person mad at the insensitive things people say (although, trust me, I haven’t even begun to share the worst ones I’ve heard!) but as a friend who knows you mean well and want to help.

Remember this rule: if you don’t know what to say, nothing is just fine. Being present is the gift of gifts.

(More to follow in the series.)

used by permission

My next post will be about what you can say to someone who’s lost a child.

But first, a few words to those who experience the death of a child. My advice to you is this: receive everything as a gift.

People mean well. They are horrified for you. They know that nothing fits. Sometimes profound words come from them; at other times folks will say things that are stupid—things that could make you mad if you dwelt on them; and still others will tear up and have nothing to say.

But receive everything as a gift. If others had the perfect words to comfort you, that’s what they’d say. But they don’t. So they open their mouths, and stuff comes out. But the translation of that stuff is this: “I love you, I’m so sorry, I don’t understand, I’d give anything to remove this from you, I’ll be praying for you.”

You don’t have to respond with anything more than “thanks.” If you’re up to it, you might tell them that it’s important to you that people who knew your son or daughter help keep his or her memory alive. They’ll understand. (And you’ll understand many years later why that’s so important . . . when everyone else’s life has gone on.)

There are so many things to say about grief (and I tried to say some of them in Megan’s Secrets). But I’ll start here: receive everything as a gift. Even the most vacuous, ridiculous piece of pop theology (death brings out the worst!). Don’t analyze it; don’t rebut it.

Just receive it as the best gift your friend had to offer on that day.

Here’s just a sample:

Megan was a flesh-and-blood display of the topsy-turvy economy of the kingdom of heaven. She was one of the least of us, yet she occupied the apex of our care, absorbing all the loving service we could offer, and able to absorb still more. Without any “thank you,” without any false reticence, without even seeming to notice, she took all that we could give her, and still we were left with the sense that it was not enough. And yet, to anyone who held her down for a breathing treatment, or marched with her through the church parking lot, singing “I’m in the Lord’s Ar-my, Yes, Sir!”, or changed her soiled undergarments, or tried in vain to rescue some semi-edible artifact from her unbelievably quick hands, or held her as she gasped for breath–to anyone who ever poured a minute’s worth of love down the bottomless pit that was Megan, the blessing which followed beggared any other reward. Megan taught us all the difference in value between receiving and giving. We only wished we could have done more: there was no question of doing less. And all the while, we were the ones being made over by her innocent carelessness and her shattering need into a closer imitation of the one who poured out his life as a ransom for many.

Megan Diane Cope (born August 26, 1984)

Megan Diane Cope died nine years ago today [now thirteen years]. Who — in our success-driven world — would want her genetic make-up? She was, after all, mentally retarded.

Her ten years here were too short. So today, again, we grieve her absence, and we look forward to seeing her again to thank her for helping to set our worlds right.