The Origin of While We're Waiting (Part 5)

This post is #196 in a series ... Through this series of posts I plan to share our family's experiences during and following our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that period from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

Read Part One
Read Part Two
Read Part Three
Read Part Four

Over the next few months, we met with Larry and Janice Brown frequently to discuss plans and pray about our upcoming retreat for bereaved parents.  Several times we drove out to Family Farm and included Stan and Donna May in our planning meetings.

I can't stress enough what a step of faith this was on the part of the Browns and the Mays.  Brad and I had been to the Respite Retreat.  We knew what a bereaved parent retreat could look like.  We knew what a beneficial experience it had been for us.  Our partners in this endeavor did not.  They could only trust what we were telling them.  And to be perfectly honest, they had some misgivings, though they did not say so at the time.  Donna May told us later (after the first retreat) that she was worried we would be bringing a "great big ball of pain" to the Farm and she couldn't imagine how this was going to be a good thing.  After all, we and the Browns were still kind of stumbling through grief ourselves at that point!

But you know, the fact that we were so ill-equipped to be tackling a project like this was a vivid illustration of 2 Corinthians 4:7:  "But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us."

Part of the planning process was getting the word out about this retreat.  We talked to a number of bereaved parents who lived locally, I shared the event on my blog, and I posted on my personal Facebook page about it.  I have to chuckle to myself when I think back ... We honestly believed that when we announced this retreat, we would have bereaved parents beating down our doors begging to be allowed to come.  That's not exactly how it worked, and that initially surprised us.  I had to remind myself how hesitant I had been about attending the Respite Retreat.

The weeks passed and our planning meetings and prayer times became more and more frequent.  Finally the day arrived.

We had instructed our guests to plan to arrive between 4:00 and 5:30 pm on that Friday afternoon.  I clearly remember the six of us sitting huddled together around a table in the Family Farm dining room around 3:30.  We were so worried that none of these people were going to show up.

On the other hand, we were even more worried that they were going to show up, because we had no idea what we were doing! 

We truly were just jars of clay.

We spent a large part of that afternoon in prayer, acknowledging our inability to do any of this in our own strength and asking God to be present in every aspect of the weekend.

Four very brave couples did show up that evening ... eight of the most precious people I've ever met.  Including the three couples who were facilitating, there were fourteen of us present at that first retreat.  Seven beautiful children were represented between us.

God did exceedingly abundantly above all we could ask or imagine during that weekend together.

To be continued ...

The Origin of While We're Waiting (Part 4)

This post is #195 in a series ... Through this series of posts I plan to share our family's experiences during and following our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that period from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

Read Part 1
Read Part 2
Read Part 3

Brad and I returned home from the Respite Retreat still basking in the glow of the new relationships we'd formed, the things we'd learned from spending time with other bereaved parents, and a renewed hope that it was still possible to have joy in life in spite of our great loss. 

We had a strong sense that God was calling us into a similar type ministry for those who had lost children, but we had no idea how to move forward with it.  We talked about it a lot, and we sought God's direction, but we just didn't have any kind of catalyst to push us forward. 

Then we met Larry and Janice Brown.  Their son Adam, a member of Navy SEAL Team SIX, had been killed in action in Afghanistan just six months previously.  We had attended the same church with them for a number of years but didn't really know them.  Our church is fairly large, and we sit on opposite sides of the sanctuary ... and you know how it is ... you just don't move much outside of your comfort zone in the pews around you when it comes to meeting new people.  Or maybe that's just me.  They're also a little older than we are, so they were in a different Sunday School department and traveled in a different circle of friends.  We just had never really had an occasion to get to know them. 

But after Adam went to Heaven, we had a desire to get to know them.  They were greeters at the back door of our church where we entered every Sunday morning, and one day, we invited them to go out for lunch with us.  They agreed, and we made a plan to meet at a Mexican restaurant after church.

Janice freely admits that she really didn't want to go to lunch with us that day.  She didn't think we would have anything in common.  They had a 36-year-old son who died in war, we had a 17-year-old daughter who died of cancer ... our stories really couldn't be any more different.  But she graciously agreed to go, and I'm so glad she did!

I remember exactly which booth we sat in that day, but I don't remember what we ordered to eat.  We were so busy talking, I'm not sure we even ate what we ordered!  Janice's concern that we would have nothing to talk about quickly dissolved as we discovered the common bond that every bereaved parent shares.  Three hours flew by as we sat in that cramped little booth. 

At some point that afternoon we shared with the Browns about the retreat we had recently attended and what an encouragement it had been to us.  We told them how we felt that God was leading us to start a ministry like this in our area, adding that we just weren't quite sure how to get started.

And these dear folks, who we were meeting for the very first time, said, "Let's do it." 

We were a little taken aback at first.  Really?  Let's do it?  Are you serious?

They were.

So we started seriously discussing the idea.  The first hurdle was determining a location where we could possibly host these retreats.  We brainstormed a bit and thought of a Christian day camp in our area called Family Farm.  We knew that the wonderful couple who run it had lost a son many years previously and we thought they might be open to hosting us.  We decided that spring would be a great time of year to have our first retreat.  We even tossed around some ideas for a name for this fledgling ministry.

We left the restaurant that day with a plan to contact the folks who run Family Farm and see if they would be willing to host a retreat for bereaved parents in the spring.  Brad gave them a call that evening, and they didn't hesitate for a moment.  Our first While We're Waiting Weekend for Bereaved Parents was scheduled for April 1-3, 2011.

It literally happened that quickly.  When God said it was time, it was time.

To be continued ...

The Origin of While We're Waiting (Part 3)

This post is #194 in a series ... Through this series of posts I plan to share our family's experiences during and following our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that period from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

Read Part One
Read Part Two

Even though I didn't really want to go, and this thing was waaaay outside my comfort zone, Brad and I signed up for the Respite Retreat scheduled for Labor Day Weekend in September of 2010.

Respite Retreat was an event hosted by David and Nancy Guthrie specifically for parents who had lost children.  At the retreat, we spent hours listening to bereaved parents pour out their hearts both in group meetings and with us privately over meals and during free time.  We did our own share of pouring, as well!  There were twelve couples there from ten different states and Canada, and our stories of loss were, for the most part, very different. But here are some things that, over the course of the weekend, we discovered we had in common:

-- The pain we share is deep, and it is very real. There were parents there whose son lived for only two heartbeats after birth, and parents whose daughter lived to be an adult with a child of her own. There were parents whose child had suffered months or years of illness, and parents whose child's life was gone in one earth-shattering moment. Two couples had lost two children. I still don't know if the conversation I overheard 17 years ago was completely accurate.  I do believe there are things that could be worse than death when it comes to your children, but the pain and grief I heard and felt that weekend was immense. It didn't matter how old our children were or how we lost them ... the pain was deep, and it was real.

-- Most of us who were there had come to terms with God's sovereignty in taking our children to Heaven sooner than we would have liked, but as one dad put it, "We reserve the right to protest." While we all agreed that our faith has gotten us through our experiences, nearly all of us had experienced some real spiritual struggles.

-- All of us had struggled with feeling "different" or "out of place" in the world. Our thoughts are different, our outlook is different, our conversation is different. One mom said, "Everyone around us is talking about kindergarten and we want to talk about calculus!"  I agreed with her.  Who has time for small talk and chit-chat, when there are issues of such great importance to discuss? I think that's one reason we enjoyed visiting with these other parents so much!  We spent all our time talking about issues and experiences we felt so passionately about.

-- All of us had struggled with getting back into "real life" after the death of our children. People usually don't know what to say to us, or if they should say anything at all. And we're no help ... sometimes we want them to talk to us and sometimes we don't! One couple said that they felt like they carried death with them everywhere they went, and it had deeply affected their relationships with others.  Oddly enough, the place we all agreed was the most difficult to go back to was church!  I think part of that is just the emotion inherent in attending a worship service, but I suspect some of it may be that we seem to feel it necessary to keep up a "front" in church so that others will think we are just as perfect inside as we appear to be on the outside.

-- We had all experienced some degree of memory loss or "brain fog" related to our child's death and the time that's passed since then. I had thought it was just me, or the fact that I was getting older, but I realized that was not the case. Maybe it's because our thoughts had become so consumed with "calculus" all the time. I was just glad to know that I wasn't the only one!

-- All of the moms felt like they had aged rapidly since the death of their child. All of us described the experience of looking in the mirror and wondering what had happened to us! And not just in appearance ... it seemed that that extra weight of grief has taken a toll on our bodies as well.

-- This may be surprising, but when one dad described their experience of losing their 3-month-old baby as 100% terrible and 100% wonderful at the same time, we all murmured in agreement. We all agreed that as awful as losing our children has been, so much good has come from our experiences as well and we could be thankful for that.

-- All of us had a strong desire that our children not be forgotten. Every one of us, in different ways, had sought ways to memorialize our children. I had never thought this would be a big deal for us ... we truly believe Hannah's storm was more about God than it ever was about Hannah ... but as time went by, I did find myself wanting to make sure that Hannah's life was not forgotten.

-- Finally, we all agreed that we could never survive these experiences without our faith in God. I often heard people at that retreat wondering aloud how people got through things like this without Him. I had said that many, many times myself. And as difficult emotionally as the retreat was, we all left there uplifted, because we all knew we would be seeing our children again. Best of all, we all left knowing that the time we've spent without them here will be redeemed in Heaven someday ... every minute will be made up for. And that was a cause to rejoice.

This retreat was an incredibly valuable and healing experience for Brad and I.  Before the retreat was even over, we began talking about how wonderful it would be to bring this bereaved parent retreat concept back home to Arkansas.  We felt strongly impressed by God that this was something He may be calling us to do.  We had no idea what the first step might be, but we were prepared to take it.

To be continued ...

The Origin of While We're Waiting (Part 2)

This post is #193 in a series ... Through this series of posts I plan to share our family's experiences during and following our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that period from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

During the final days of Hannah's life, many people dropped by the hospice center and left books, gifts, food, and other items for our family.  These kindnesses were so greatly appreciated.

Most of these gifts were accompanied by a card indicating who had given them.  But one gift, a book called "Holding On To Hope" by Nancy Guthrie, was accompanied by a card signed only with the initials "plc".  When the book was brought to the room that Hannah and I shared, I read the back cover and discovered that it was Nancy's story about losing two babies to a congenital disorder called Zellweger syndrome.  It sounded like an interesting book, but frankly, I couldn't really see how it related to the situation in which we found ourselves.  Here I was with my 17-year-old daughter dying of cancer ... I wasn't sure how this book would be helpful to me.

But after Hannah went to Heaven and I was ready to read something again, this was the book I was drawn to out of all the books we had been given.  I picked it up and started reading it, and it was exactly what I needed to read.  Zellweger syndrome is a terminal condition, just as Hannah's cancer had been a terminal condition.  In her book, Nancy grappled with difficult issues of God's sovereignty in situations of terminal illness ... when you pray for healing, when you believe God can (and sometimes does) heal, yet He does not choose to heal your child.  It confirmed so much of what we had experienced in our year-long journey with Hannah.

At some point, I got on her website to learn more about her and her story.  A link labeled "Respite Retreats" caught my eye.  I clicked on it and discovered that she and her husband host retreats for bereaved parents in Nashville, Tennessee.  I was simultaneously intrigued and unsettled.

I was intrigued because of what I discussed in my last blog post.  Brad and I both craved interaction with other parents who had lost children, and this sounded like the perfect opportunity for that.  On one level, it sounded like a dream come true.

I was unsettled because this type of event was way outside of my comfort zone.  The thought of going somewhere I had never been to talk to people I had never met about the most painful experiences of my life was actually somewhat terrifying. As a classic introvert, that's exactly the type of situation I typically try to avoid.  I don't even go to retreats with women I know from our church!  I've just never seen myself as a "retreat" type of person.

I showed the retreat information to Brad and told him I thought it looked like a really cool thing that would probably be really helpful to us, but hastily added that I didn't want to go.  Brad, as a classic extrovert, would have gone without hesitation, but I just wasn't ready.

I did sign up for Nancy's e-newsletter before I left the website.  A few months later when I received her newsletter and read about the next Respite Retreat scheduled for that upcoming September, I once again brought the idea to Brad.  Though I was still pretty uncomfortable with the whole idea, I was ready.

To be continued ...

The Origin of While We're Waiting (Part 1)

This post is #192 in a series ... Through this series of posts I plan to share our family's experiences during and following our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that period from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

This series would not be complete without a discussion of the ministry which developed out of Hannah's homegoing.  Over the next several posts, I would like to share how God used Hannah's storm to initiate the While We're Waiting ministry to bereaved parents.  

After Hannah left for Heaven, Brad and I began trying to ease back into "normal" life.  For several months I had been quite isolated ... pretty much only staying home with Hannah or traveling back and forth to Children's Hospital in Little Rock.  So my forays back to church, work, and social activities were shaky at best.  And for Brad, returning to his role as high school principal without seeing Hannah at her locker in the hallway or with her friends at lunch every day was heartrending.

Because, you see, while everyone else around us was the same as they'd always been, we were changed ... changed to the very core ... changed at the cellular level.  Nothing about our lives was the same, nor would it ever be the same again.  We felt so different from everyone around us, and we felt very alone.  Not lonely, mind you, but alone.  There's a difference.

While other people were content to talk about the unseasonably cold weather or the Razorback basketball team or their upcoming summer vacation, we craved conversation about things of eternal significance.  Idle chit-chat had absolutely no appeal to us.  I had a hard time even focusing on what other people were saying much of the time because of the ongoing dialogue taking place in my own mind.

It didn't take us long to realize that the people with whom we were most comfortable were those who had lost children.  We could talk to these people ... really talk.  We didn't have to parse our words; we didn't have to hide our tears; we didn't have to feel guilty about sharing our struggles.  It didn't matter if their child was older or younger than Hannah; it didn't matter if their child's death had a different cause; it didn't matter if had been ten years or ten months ... we developed an immediate bond with these folks. 

The bereaved parents who shared with us out of their own pain in those early days and weeks remain precious to us to this day.

To be continued ...

"The Dead in Christ Shall Rise"

This post is #191 in a series ... Through this series of posts I plan to share our family's experiences during and following our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that period from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

March 2, 2009

There never really was any question where Hannah's body would be buried.  There's a beautiful cemetery in Briggsville, Arkansas, where the Sullivan family farm is located.   Hannah spent many happy days at the farm ... hunting, riding 4-wheelers, and just hanging out with her cousins. Occasionally, we would stop at that cemetery and visit the graves of her great grandparents and other relatives. She always loved to walk around and read all the different headstones. It's a beautiful country cemetery, on a hillside with lots of trees and a gorgeous view. We knew that was the right place.

We chose to have a private family burial service the day after her celebration service.  The cemetery is nearly a two-hour drive from our town, and we didn't want everyone to feel they had to travel all the way there after the funeral.  We also knew that Hannah would not want a solemn caravan of vehicles with their lights on trailing after a hearse.  So we all just hopped in our own vehicles and met the funeral home folks at the cemetery that morning.

Unfortunately, several members of our extended family, including one set of Hannah's grandparents, had been struck down by a stomach bug overnight and were unable to attend.  We all hated that they couldn't be there, but it was too late to reschedule.

We sat under the little funeral tent beside the casket, a bit huddled together for warmth.  The sun was shining, and I was thankful for that ... but it was quite chilly.  It was still so hard to believe that we were the people sitting in those chairs.  How could this be our family?

The service was led by two of Hannah's uncles ... my brother Steve and Brad's brother Mark.  I remember my brother referring to David's words in 2 Samuel 12:23 as he mourned his son, "I will go to him, but he will not return to me," and feeling the pain of that truth deep in my heart.  As we concluded, our sister-in-law's sister Felicia led the group in singing, "It is Well With My Soul."  And despite the pain and sorrow, deep down it was well with my soul.

The cemetery is on a fairly steep hillside, and Hannah's grave is nearly at the top of the hill. In fact, it's a bit of a hike to get up there.  One thing that sticks out in my mind from that day is watching the pallbearers carry her casket up that hill. It bothered me that the casket was not level as they climbed, and I worried that all the things in there ... her stuffed dog, the letters her friends had put in there, the cross necklace that Mrs. Pat had put in there ... were sliding down to her feet. Hannah always liked everything "just so" and I was irrationally bothered by the thought of things shifting around. Such a strange thing to worry about on that day, but grieving minds are not always rational.

To this day, even ten years later, I have a very strained relationship with Hannah's grave. I don't normally like to spend time there. There's something about seeing your child's name in granite that brings you back to cold, hard reality. And although I know beyond the shadow of a doubt that Hannah herself is not there, and that it is just her earthly shell there below the ground, it is extraordinarily difficult for me to be that close to her body and not be able to be with her. Her body was just a vessel ... I know that ... but I loved that vessel. I cared for that physical body, when she was a newborn and unable to do anything for herself, and then again, as the cancer stole her ability to care for herself.

Maybe one day I'll make peace with her grave ... and then again, maybe not.  It's not permanent anyway.  One of these days the dead in Christ shall rise, and we will be caught up together in the clouds to meet the Lord in the air (1 Thessalonians 4:16-17) and that grave will be made obsolete.

Oh, how I look forward to that day!

Celebrating a Life Well Lived

This post is #190 in a series ... Through this series of posts I plan to share our family's experiences during and following our 17-year-old daughter's year-long battle with brain cancer, which began in February of 2008. My desire is to process through the events of that period from the perspective that a decade of time has brought ... for myself, really. But if you'd like to follow along, you're welcome to join me.

March 1, 2009

Hannah's life was celebrated at First Baptist Church in Hot Springs on this date ten years ago.   We had two goals for the service -- to honor Hannah's life and to point people to Jesus.

I remember stepping into the church building feeling so very raw and exposed.  Even though Hannah's death was not a surprise, it was a shock, and I was very much still reeling from effects of that shock.  Walking down that long aisle to be seated in the front row was an incredibly surreal experience. 

The service began with Hannah's youth pastor, Donnie Burrow, singing an original song he wrote for Hannah. It was beautifully done, and so very special. Our pastor, Manley Beasley, then read the obituary and led in a prayer, followed by the Casting Crowns song "Praise You in the Storm", sung by Danny Baxter, our church's worship pastor.

Bethany and Brad each took a turn speaking in tribute to Hannah, followed by the Chris Tomlin song "I Will Rise", sung by our dear friend (and Hannah's ophthalmologist), Tommy Moseley.  I loved that he sang the entire song with a big smile on his face, clearly reveling in the fact that because Jesus had overcome and the grave was overwhelmed, Hannah had won the victory!

Our dear neighbor, and semi-retired pastor, Gerald "Tiny" Taylor, brought a message about the peace of God, and the service closed with a slide show of pictures of Hannah, and another prayer by Brother Manley.  The gospel was shared, and the hundreds of people in attendance heard it clearly, some of them perhaps for the first time.

I was so glad that Brad and Bethany each took the opportunity to speak that day.  Bethany was just fourteen years old, and it took a lot of courage for her to stand up before that huge crowd and speak from her heart, but she did it.  She talked about how she was now an only child and the depth of that loss, but she ended by declaring that we really didn't lose Hannah ... we knew exactly where she was.

Our goals for the service were accomplished, and we were pleased.

When the celebration service concluded, we all went to Hannah's high school cafeteria, where a dinner was served by friends from our Sunday School class.  So many members of our extended family had traveled across the country to be with us for this special day, and it was wonderful to have this opportunity to visit with them.

Hannah's obituary ...

Hannah Joy Sullivan

Hannah Joy Sullivan, age 17, entered Heaven on February

26, 2009, after a year-long battle with brain cancer. She was

born on October 22, 1991, in Fort Smith, Arkansas, to Brad and

Jill Sullivan. She attended Magnet Cove High School, where she

was junior class president and an honor student. She was a

member of Hot Springs Baptist Church, where she was an active

member of the youth group. She battled her cancer with grace

and strength, never complaining, and accepted her “storm” as an

opportunity to be a witness for Christ. We know that now, in

Heaven, she is more alive than ever before. 

Her family would like

to thank the staff of the Arkansas Children’s Hospital

Hematology/Oncology Clinic and the staff of St. Joseph’s Mercy

Clinic on Airport Road in Hot Springs for the wonderful care they

provided to Hannah over the past year.

Hannah is survived by her sister, Bethany; her parents, Brad

and Jill Sullivan; her grandparents, Charles and Nina Sullivan of

Van Buren, Arkansas, and Tom and Betty Persenaire of Mountain

Home, Arkansas; and a host of loving aunts, uncles, cousins, and

friends.

Visitation will be Saturday, February 28, from 6:00 to 8:00

p.m. at Hot Springs Baptist Church; and a celebration of her life

will be held on Sunday, March 1, at 2:00 p.m. at First Baptist

Church of Hot Springs. There will be a private family burial on

Monday, March 2, at Mount Zion Cemetery in Briggsville,

Arkansas.

Arrangements are by Hot Springs Funeral Home.

I'd also like to share a poem which was included in the funeral program that day.  It was written by our school nurse, and it really captures our Hannah ...

Hannah, Beautiful Hannah

Hannah, beautiful Hannah,

with your big, bright smile

We know at first glance

You know who holds tomorrow

and who holds your hand.

The way you carry yourself

and respond to others 

shows us

You know who holds tomorrow 

and who holds your hand.

The way you lift others up

even in your hour of need 

shows us

You know who holds tomorrow

and who holds your hand.

Your reaction to all you have been through

at such a young age 

shows us

You know who holds tomorrow

and who holds your hand.

Your love for the Lord

and your confidence in His promises 

shows us

You know who holds tomorrow

and who holds your hand.

None of us know about tomorrow,

but if we know the Lord 

as our personal Savior as Hannah did

We can all know with confidence

Who holds tomorrow

and who holds our hand.

~Shawn GoodKnight, 2009